CAH Guestbook Welcome to the Guestbook! Congenital Adrenal Hyperplasia Guestbook

Welcome to the Guestbook! Feel free to tell us about yourselves and your family.

C. Johnson - 12/26/00 05:53:46
My Email:tmjohnson17@juno.com

Comments:
I am 15 and I am very glad to know that I not alone in this

- 12/23/00 11:13:14

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Frances Kushner - 12/06/00 23:34:15
My Email:Fatfannie@prodigy.net

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I just need to talk to someone about CAH.

eileen godowsky - 11/13/00 19:20:28
My Email:eg18kv@aol.com

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Would like to find a support group in the NJ area.

Becki Lader - 11/10/00 22:22:53
My Email:speck@canby.com

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I am 6 months pregnant with our 3rd child, and we have been told that our daughter probably had CAH, however, they won't know for sure until she is born, but they are fairly confident. I was given this link by our Genetic Counsler. I hope to learn more bout CAH

Julie Smith - 10/22/00 21:33:51
My Email:sjulie@attcanada.ca

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I found your web page very informative, since I was born with CAH and at 29 years of age I am starting to learn something about it since I recently bought a computer and was introduced to the internet.

Becky - 09/10/00 01:39:08
My Email:ebjwild1@hotmail.com

Comments:
My sister in law just found out her son (6 weeks) has congentila adrenal hyperplasia-salt wasting type. They will be starting on meds soon. My husband and I had a son stillborn and found out he died of fetal anemia and sepsis. I'm being to wonder if ma be it's related. Does anyone have any information?

Laurel Meier - 09/08/00 02:29:25
My Email:engr@tznet.com

Comments:
I have a beautiful 18 month old baby girl with salt-wasting 21-hydroxalase cah. She is doing very well, with only one scare for us. She had surgery when she was 15 months old, so if anyone wants to talk about that. We are from Wisconsin. Anyone else?< r>
Susie Stenfors - 09/07/00 20:29:36
My Email:susie.stenfors@usd305.com

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Just a parent of an adult CAH son of 23 who is now taking over his own medical concerns and it is hard to give up being involved with his condition after 23yrs. Would like to talk to some adult males that are CAH and know what lies ahead. What to be care ul about and etc. for our son.

Lynn Grabany - 08/20/00 01:57:40
My Email:LGrabany@aol.com

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When I learned last December that our beautiful 7-year-old son, Keith, had CAH (non-salt-wasting), I was totally overcome. I'd never heard of CAH, and learned quickly how uncommon the condition is. Finding sites like this has made me feel less alone, an I've gained so much valuable information. There are so many with this "rare" condition. Thank you to whoever started this site, and thank you to all who keep it going and provide, in small and in big ways, the help we all need.

Victoria Castro - 08/17/00 04:26:03
My Email:GrMaria330@AOL.com

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I have two daughters with CAH, need to find a support group. Thanks.

Sharon - 08/10/00 19:31:13
My Email:sharon.bushell@ntlworld.com

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My son Wesley was diagnosed with cah non salt wasting type in February this year we did'nt have the internet then but I wish we had because it makes you realise there are other people going through exactly the same thing. Wesley is 5 and a healthy happy l ttle boy , thanks to the pages of this guestbook I have even managed to get a letter from the doctor translated to take on holiday abroad.It's a great means of support thank-you everyone who's taken the time to share their experiences.

Sharon Reynolds - 08/09/00 11:27:12
My Email:botherme@vianet.net.au

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Tara-Lee - 08/07/00 16:43:54
My Email:ntpacurari@webtv.net

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I'm a 30 year old female with Congenital Adrenal Hyperplasia.I'm dealing with infertilty and looking to find other females who could be dealing with the same. I also wold like to talk with other female with CAH who have had successful pregnancys.

Lisa Jaskie - 07/27/00 22:29:26
My Email:kevin36101@msn.com

Comments:
I have a daughter born on 06/25/00 with CAH. I would like to hear from other parents with children who have CAH. My daughter also is the salt-wasting type. She will be having surgery in about 6 months. I would like to hear from someone whose daughter as had the surgery. (We are from Milwaukee, Wisconsin) THANK YOU!

Lisa Jaskie - 07/27/00 22:12:05

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julie - 07/27/00 16:02:07
My Email:jshapirolaw@yahoo.com

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Would like to hear what issues, physical and emotional, my twin neices may face as they grow up. They are 6, have 21B Hydroxilaise, and are not salt-wasters. They were diagnosed at birth. They have had 2 corrective surguries, and are on medication. W ight is a battle due to the steroids. Trying to decide what to tell them and when, and wondering what they may feel emotionally, sexually, physically, etc as they grow. Also interested in getting to know adults with CAH and parents of kids with CAH. Th nk you so much.

Denise - 07/24/00 02:59:18
My Email:bart00@msn.com

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We have a 16 yr old son, diagnosed at birth with ambiguous genitilia, taken to Children Hospital of Philadelphia, then diagnosed with CAH-17 hydroxypregneleone deficiency. I like to be added to mailing list and to chat with other parents going through it It is wonderful that there is now a way to communicate and share info with each other. It is wonderful that God has let so many of our paths cross. God Bless Denise

deborah parker - 07/23/00 19:00:45
My Email:babycakes1954@juno.com

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deborah parker - 07/21/00 16:20:30
My Email:babycakes1954@juno.com

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my grandaughter was born on july6 with cah.im trying to find out all i can on it for my daughter

Margaret Williams - 07/11/00 23:04:39
My Email:margaret668@cherokeetel.com

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Laurie Kovalcik - 07/06/00 22:25:58
My Email:alohalauli@aol.com

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My daugher has been dignosed with LOCAH.

ricy63 - 07/05/00 20:23:23
My Email:ricy63@aol.com

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i am a 24 yr old female with cah 21 hydroxylase it has been poorly treated until now. the hydrocortisone is not working like it should and my 17 hydroxyprogesterone level is over 19000. the dr's in my town are confused and dont know how to treat me.

Tina Castilleja - 06/24/00 18:58:36
My Email:d.castilleja@worldnet.att.net

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Hello. My daughter was diagnosed with cah back in sept. She was only 4 days old. Needless to say we were very apprehensive with the whole situation . She is now a very happy baby at almost 10 months old she is a whopping 14 lbs. Hopefully she will always njoy great health. Our thoughts and prayers are with all of you. Lots of luck with you little ones.

Tina Castilleja - 06/24/00 18:54:01
My Email:d.castilleja@worldnet.att.net

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Tera Olix - 06/04/00 00:25:32
My Email:tolix@hotmail.com

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My daughter was diagnosed with CAH at birth due to an ambigious genitalia. She also has the salt-wasting form too. She has had two surgeries to fix her genitial area, and has been hospitalized several times due to low sodium and high potassium. If anyo e would like to e-mail me feel free.

Gretchen - 05/24/00 15:58:52
My Email:gretch104@ameritech.net

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We have a daughter with CAH who will be 6 in July. She has just had her second vaginoplasty. The first along with the clitoroplasty went really wrong. We think the doc removed her entire clitoris. Otherwise, she is a beautiful, energetic and smart lit le girl. We live in Ohio, can't find anyone close with CAH or CAh parents. Would love to hear from anyone with comments, questions, concerns or answers!!!

paula - 05/21/00 21:09:08
My Email:pmar103353@aol.com

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we have a four year old female. she was diagnosed at 3 hours old. we have had two great endocrinologists at children's hospital in boston. she has had two major surgeries and two cystoscopies. doing very well on meds...smart, growing well..hoping it is a ways this way!

Jennifer - 05/15/00 23:42:59
My Email:JJTCUMMINS@AOL.COM

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Has anyone diagnosed with CAH also been diagnosed with agenesis of the corpus callosum (ACC)? The corpus callosum is the area of the brain that allows the left and right hemispheres to communicate. It occurs in one to three of 10,000 births, and, since my son also has salt-wasting CAH, a metabolic disorder, occurring in one in 15,000, I am trying to find some other parent or person to communicate with that understands both conditions. ACC occurs sometimes in conjuction with metabolic disorders, most notabl septo optic dysplasia. Thanks.

lottie - 05/14/00 16:29:17
My Email:lottie269@hotmail.com

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Yenong - 05/11/00 22:56:05
My Email:Yenongq@supra-products.com

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I have a son with CAH. Thank all of you for sharing and support.

BECKY WEBB - 05/10/00 12:46:54
My Email:bruth@midsouth.rr.com

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I have a grand-daughter born 4/22/00 with CAH. I desparately want to meet and talk to parents whose children have CAH. Rebecca's is the salt wasting type. My particular interest is in what can be expected for a female with CAH. Thanks, Becky Webb

JANE - 04/28/00 03:56:41

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Hi I have two children with CAH and both are salt losers. L'tecia is 5 years and Shane is 14 months. We live in Western Australia and have not met any other parents of children with CAH but would like to. We are not on the internet so I cannot leave an address but am able to access this site on a fairly regular basis so please leave me a message here.

- 04/28/00 03:02:10

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Tawana Brown - 04/13/00 14:21:00
My Email:misstrenee@hotmail.com

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I lost my sister three weeks ago and this was listed on her death certificate along with Adrenogenital syndrome. I always knew about her condition but never really knew what it was because my family never discused it with me. She was 28 years old and lead ng a very active life. The medical examiner also said that she had heart failure and that they were surprised that she lived as long as she did with the condition her heart was in. Is heart disease a side effect to this condition and where can I find more information on this condition.

cecile hoerle - 04/07/00 20:19:12
My Email:cecile.hoerle@valeo.com

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j'ai une petite fille de 9 mois qui pr�sente une hyperplasie des surr�nales avec virilisation.Elle a �t� op�r�e il y � 6 mois ey aujourd'hui tout semble bien aller.

Nance - 04/04/00 03:11:45
My Email:pinkcollar@home.com

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Hi: I've been diagnosed with Conn's Syndrome, a rare disorder which results from a functioning tumor on the adrenal gland. The production of too much aldosterone results in a multitude of symptoms, including heart damage. Because Conn's is rare, I'm looking for support groups/chat rooms for others who have hyperplasia of one adrenal gland, and who have had surgery (laparoscopic or open adrenalectomy). Thought I'd pop into your site and browse! Thanks.

Cindy - 03/25/00 08:06:12
My Email:Cindymouse@msn.com

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I am a 35 year old female with cah. I was just looking for some info. Thanks

Liz Fritts - 03/18/00 21:01:33
My Email:Lizzymom@aol.com

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Hi! I have a 14 year old son and an 8 year old daughter with 21 hydroxylase deficiency - non salt wasting. Would like to hear from people about growth issues/solutions. We are in New Hampshire-anyone else?

Sheri - 03/18/00 01:56:34
My Email:Berrysheri@netscape.net

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Jodi Protokowicz - 03/16/00 00:47:01
My Email:fire73@email.msn.com

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I'm a lifelong sufferer. Please add me to any mailinglists. Thank You.

Tara-Lee - 03/11/00 02:39:26
My Email:NTPACURARI@WEBTV.NET

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My name is Tara-Lee and I'm a 29 year old female with CAH.I am dealing with infertility and looking to find other females who may be in a similar position. Thank you Tara-Lee

Gerry - 03/10/00 04:52:58
My Email:rgerryr@home.com

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hello there, I have two beautiful children with CAH,i look forward to meeting knew people,to learn new ideas,and ways to cope with different circumstances.

margaret668 - 03/08/00 02:06:13
My Email:cherokeetel.com

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hah a child with cah-salt wasting she is 7 years old

Beth - 03/02/00 18:22:42
My Email:oxygen4u@wt.net

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I live in Houston, Texas. My son, Stephen, is 4&1/2 and has CAH.

jessica karp - 02/26/00 22:39:28
My Email:mkarp@mindspring.com

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This is such a great resource!!! I have a seven year old (non-salt wasting) son that was dioganosed at five weeks. I also have a ten year old son that is not affected. I live in the Atlanta, GA. area and would like to talk to others that are in the area Hope to hear from you soon. jessica

CRICKET - 02/21/00 20:25:38
My Email:CRICKTMK@AOL.COM

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THANKS FOR SHARING YOUR LOVE AND CONCERN FOR OTHERS CRICKET(A CAH GRANDMA)

ELIZABETH - 02/13/00 04:13:11
My Email:elizat1955@aol.com

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Hi My grand daughter died on Feb 3 . She had cah. My daughter is desparately in need of counciling but will only consider a group that is realted to cah. Can you help? She lives in Danville Ca.

Deidra - 02/12/00 04:58:29
My Email:deidrabegley@prodigy.net

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My sister recently found out her 3 year old son has CAH. She has a 5 & 7 year old that do not have it. She just found out she's pregnant. She doesn't know if she should take the drugs and test given during pregnancy or wait and see what happens. Pleas tell me what would be best.

Cindy - 02/10/00 16:35:41
My Email:cindyg24@shentel.net

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Hi, my name is Cindy and my daughter Alison was diagnosed with salt-losing CAH at birth and is now 4 months young. I have been reading up on anything and everything to find out about her condition and I am hoping this site will be the most helpful because of personal experience. I am only 20 years old and not only was having a child a new and exciting experience but this condition was totally unexpected. Alison just had her surgery clitoroplasty last month and did fine but we are a little worried about her weight gain. Please email me with any info your willing to share. Thanks, Cindy.

Jill Spain - 02/05/00 05:00:35
My Email:jspainx2@earthlink.net

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I just viewed the guest book and I realized I made some typos. Sorry it is late. My e-mail address is jspainx2@earthlink.net. My son has CAH in the non-salt wasting form. We had that confirmed to us today. I am looking for info. on issues like: Can t ey have their immunizations? Are there dangerous symptoms to look for? Is something as simple as thrush harmful to the baby? If anyone can provide me with support and info. I encourage you to please write. Thanks again, Jill Spain

Jill Spain - 02/05/00 04:51:25
My Email:jspainx2@earthlink.net

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My son is one month old and he has been diagnosed with CAH. I feel so helpless and worried about his every action. I would relly be interested in asmuch info as possible. Questions like will he be normal? and can he have his immunizations? are consumin me. If anyone can offer some info please e-mail me and my husband at jpainx2@earthlink.net Thank you, Jill

sheila - 02/04/00 05:03:38

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my daughter was born 5-1-98 with cah. i would like to have someone in northern california write to me and let me know if they are close to my area. and if i could talk with them about the disease. i have no computer and would have to be sent mail to 2778 old alturas road redding ca 96003. if you could seend me information or know of a support group in my region of the us please write me thank you. sheila

Helen & Brett Mann - 02/01/00 05:01:06
My Email:b.mann@netaccess.co.nz

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We have two children with CAH: a boy of thirteen and a girl of eight. We're keen to learn as much about their condition as possible and are especially interested in new developments/research. We run a support group in New Zealand for people with this co dition,.

FLWRZCHCK - 01/22/00 03:51:24
My Email:FLWRZCHCK

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IAM TRYING TO FIND A CHAT ROOM... I WOULD LIKE TO TALK TO OTHER PARENTS OF CHILDREN WITH CAH. IT WOULD BE HELPFUL TO ME IF I COULD TALK TO OTHER FAMILIES WHO HAVE CHILDREN WITH CAH.. PLEASE E-MAIL ME OF IM ME IF YOU READ THIS LETTER IAM WILLING TO MEET N W PEOPLE .. THANK YOU FLWRZCHCK

Cindy - 01/16/00 06:31:06
My Email:armisteadcj@netscape.net

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Our son will celebrate his first birthday soon! In Calif. they don't test for CAH and we almost lost him at two weeks due to his salt-wasting.. He is doing incredibly well but we would love to hear from experienced parents who have lived thru it all!! A so we are interested in how it affects females. Hope to hear from you!!

Maria - 01/15/00 03:31:31
My Email:mariac005@yahoo.com

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Hello I am a 22 year old and I reside in the state of California... I was diagnosed with CAH at birth................I havent met anyone my age that has this mysterious complication......I think about it sometimes and ask myself why.... but there is nothi g to get rid of it....I live a normal life except for the financial burden of the medication........I would like to keep in contact with everyone a to see if you feel the same way I do............ HOpe to see you soon thanks, Maria

Susan Armbruster - 01/01/00 21:53:02
My Email:Susancampinggal@cs.com

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40 yr old with Late-Onset CAH. I live in the Seattle/Tacoma area of Washington. Diagnosed at age 19 but had symptoms from about age 6

Jennifer and Shawn Decuir - 01/01/00 02:33:27
My Email:Shawn323@wcc.net

Comments:
Our daughter, Jessica, was born on July 13, 1998 with CAH. Please send me any information you can. I am continueally researching new information that may help us in any and all situations. At this point, I'm especially interested on information concern ng dextosterone, the horomone given to mothers of children with CAH during following pregnancies.

Jenine van Moorst - 12/09/99 05:27:48
My Email:truckor@mwed.co.za

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Jenine van Moorst - 12/09/99 05:27:15

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Dawn - 11/15/99 05:24:26
My Email:dhotting@gte.net

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I have a 17 year old daughter with CAH. Diagnosed at Birth. I have always wanted to talk to older people with CAH. You just wait and wonder what the future holds. Dawn

Mark & Patty Zarraonandia - 11/12/99 20:31:15
My Email:zarra320@aol.com

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My wife has CAH and we would like to know if anyone with CAH has had children.

Callie Jessup - 11/06/99 03:35:49
My Email:callieji@aol.com

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My son was diagnosed with C A H at 1yr. old.He is 11 now,and doing great!He has 17 hydroxlase,salt wasting form.This web page is great,because as you know C A H is not common and any information or support is rare outside the doctors office.

- 10/29/99 09:39:36

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Dot Gronn - 10/24/99 04:23:47
My Email:cahdot@connexus.net.au

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Hi everyone in CAH land, for those how don't know me I am the co-ordinator of the CAH Support Group in Australia. I have two Adult children with salt losing CAH. I am currently work on our next Newsletter, if you have any issue's that you think needs to be addressed about CAH you can email me them . I work closely with the Royal Children Hospital in Melbourne and the Department of Endocrinology and Diabetes. Our Support Group produce a Newsl tter twice a year, this Newsletter is sent all over the world. Our subscription is $12.oo US and 8, pound UK $10.00 Australian. I am happy to send you a Newsletter first, if you want to be on the mailing list sent your membership. You can talk to me on my web page www. rch.unimelb.edu.au/CAH/ cahdot@connexus.net.au Kind Regards Dot Gronn

Linda Ridley - 10/20/99 08:50:46
My Email:andrew.ridley@xtra.co.nz

Comments:
Hi everyone, I am from New Zealand and have a 9 year old daughter with CAH. She is on fludrocortisone, cortisone and prednisone and is piling on the weight, I just wondered if anyone has any suggestions on alternative medicines, or what medication has been working ov rseas. Thanks

Linda Ridley - 10/20/99 08:47:38

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ANDREW WHITEHOUSE - 10/15/99 21:55:26
My Email:andrew@awhitehouse.fs.net.co.uk

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I HAVE A 4 YEAR OLD DAUGHTER WITH SALT LOSING CAH. SHE WAS DIAGNOSED AT 10 DAYS OLD . SINCE TREATMENT BEGAN SHE HAS BEEN HEALTHY AND WELL ALTHOUGH VERY VERY ACTIVE !! i WOULD LIKE TO HEAR FROM ANY PARENT WHO HAS ALREADY EXPERIENCED THEIR CHILDREN GROWING UP WITH CAH AND COULD POSSIBLY ADVISE WHAT THE FUTURE HOLDS IN TERMS OF DIFFICULTIES(I ANY) DURING PUBERTY ETC ETC .

ANDREW WHITEHOUSE - 10/15/99 21:35:39
My Email:andrew@awhitehouse.fs.net.co.uk

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Teresa - 10/15/99 10:10:45
My Email:jtjulian@swbell.net

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Hi new friends, I just found a sight I wanted to share. It answered alot of questions alot of you had if you are still with us. It is : http://www.tdh.state.txus/newborn/hand_cah.htm Very informative. Thought I would share. Hope it helps. Love, teresa in TX

Teresa - 10/15/99 09:53:08
My Email:jtjulian@swbell.net

Comments:
Hi Me again! Sorry! I just read all of your emails and I still have a question I was wondering if any of you could answer. The children we are trying to adopt that have CAH and are on meds also have been labeled as mild mental retardation. Are these two t ings connected. Does one cause the other or are they totally seperate. Thanks for any info! Love, Teresa iN TX You can email me directly if you would like. Thanks! I just want to be sure I know what I am getting into and to be sure I would be able to prov de these kids with all that they need. I do not have any medical background.

Teresa - 10/15/99 09:43:37
My Email:jtjulian@swbell.net

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Just trying to find out more about this illness. We are thinking about adopting 2 children with this. Thanks! Teresa in TX

shauna - 10/11/99 21:01:49
My Email:snmdb@hotmail.com

Comments:
my name is shauna and I have a 8 yr old with CAH he recently had to have surgery to put a pin in his leg. Because of a fall. we were told it was a result of his weakened bones because of this condition, we were also told that his veins were also weak. This is the first serious problem we've had to face since his diagnosis at 10 days old. It made me realize that I've taken his good health for granite, I'm afraid that this is the begining of a long hard struggle, with an unsure ending. If anyone could offer some advice to help us through this it would be much appriciated. shauna

neil compton - 10/01/99 12:44:58
My Email:kikoka@microed.com.au

Comments:
hello i was just looking at this web site i am new to this stuff my little girl has cah and i was just checking it out ok thanks for your time bye now

Lisa Dibden - 09/30/99 06:07:07
My Email:moonbeem73@hotmail.com

Comments:
I have a son,jesse, who was diagnosed with the salt-losing CAH at 4 weeks of age, he is now 13 weeks old. As yet I haven't had any major problems with him but I would be interested to hear from anyone who has come across any problems from the medication t at they take. He is on cortisone and fludrocortisone. I would also like to hear from anyone from Western Australia and anyone who is planning a second pregnancy.

Rebecca Voyles - 09/28/99 21:45:34
My Email:hjb@alltel.net

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I have two sons with CAH the salt wasting type. Austin is now three and Avery is 5 months old. They are both doing fine now.

Debbie Doyle - 09/28/99 00:59:20
My Email:doyle@stargate.net

Comments:
I have a beautiful 5-year old daughter who was diagnosed with CAH Hyrdoxylase 21 at birth. On day 3 she started her meds. She has been mostly a healthy child, with only one incident. She had the rotavirus at age 3. She came through it all well. I'm h ppy to say she is growing well and is very active and happy child. I thank God for her everyday and for all the wonderful doctors we have. This web site is new to me and I know I will be a regular visitor on it. Its great to know that there is someone o t there who knows what its like to be a parent to a CAH child. Any Pittsburgh, PA CAH children, please write.

Debbie Doyle - 09/28/99 00:46:14

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Roli Mathur - 09/27/99 10:25:27
My Email:rolimath@hotmail.com

Comments:
A good site for the parents of an affected child. Also carries information on the organisations ready to help the families with CAH affected child\children.

Lilea Sward - 09/24/99 18:04:47
My Email:lileas@hotmail.com

Comments:
What a joy for CAH the internet is! It makes obtaining information etc. so much easier. Lilea-

Maureen Dotta - 09/15/99 13:04:47
My Email:maureen.a.dotta@us.abb.com

Comments:
Fantastic site!! I've had CAH-21 since birth. I am now 28. My older brother also has CAH-21 and therefore I was tested right away. I've gone through the resentment of having this condition and the MANY Dr's appointments. Overall though, I can't complain. 've been very healthy and able to lead a normal life with medication. My questions now lead to having a family of my own. I don't want to pass this along to my children. Does anyone out there know anything about the genetic end of passing this along? Than s for any input! I look forward to talking!

Hilario Vassoler - 09/15/99 03:25:53
My Email:hclv@opus.com.br

Comments:
My son is 5 years old and has the salt-losing form of CAH. He was diagnosed at 15 days birth in Brasil. He takes 7,5 mg of Cortef and 0,05 mg of Florinef. He is well, but we worry with his height ( 0,97 meter ). Where are the most advanced CAH centers ?
Julie Vickers - 09/14/99 21:15:28
My Email:fuller@traverse.com

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My son was diagnosed with the salt wasting form of CAH at one week old.

Michele Ainley - 08/26/99 22:01:26
My Email:michele.ainley@net.ntl.com

Comments:
Greetings to you all. I am a 40 year old woman with CAH (classic 21- hydrox. form)and live in Belfast, Ireland.

Tina S. - 08/25/99 21:29:37
My Email:www.rtjks@megalink.net

Comments:
Great to see people who know about CAH. So many people have never heard of it. My 3 year old son was born with salt wasting CAH, diagnosed at 10 days of age.

K. Michael McLead - 08/23/99 00:47:42
My Email:kmmclead@mindspring.com

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mark koopmans - NL - 08/15/99 11:24:25

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newborn sun with CAH

Larry - 08/05/99 11:18:35
My Email:waldos@dragnet.com.au

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I was so happy to find the information that i found on the internet. I Larry was diagnosed with CAH 8 days after birth,I'm now 12 years old and well. I would be intrested to hear from any young people who can relate to our condition.

Debra - 08/03/99 18:11:00
My Email:Jen debkev@aol.com

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I have adernal hyperplasia for 43 years. I take 7mg of prenisone daily. I gave birth to twin girls 23 years ago. I have lived a normal healthy life any questions, ask me.

Debra - 08/03/99 17:06:05
My Email:Jen debkev@aol.com

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I have adernal hyperplasia for 43 years. I take 7mg of prenisone daily. I gave birth to twin girls 23 years ago. I have lived a normal healthy life any questions, ask me.

Melody Meier - 08/03/99 14:30:57
My Email:melmikmol@aol.com

Comments:
Have a 13 yr. old daughter just newly diagnosed with late-onset CAH.

Kim - 07/30/99 19:02:23
My Email:sweetiee1@yahoo.com

Comments:
I am so thankfull for the wonderful information available on the internet. I was diagnosed with Late-Onset Adrenal Hyperpalsia when I was 24. I am now almost 29. I am recently married and we want to have children, I wonder about what effects might be f r our future children and if I will have problems becoming pregnant. I have tried the Dex but came off it because of wight gaina nd not much help with the hirsutism. Right now I have been on Aldactone. I have no idea why this drug was chosen but I have seen some good results. I would be willing to keep in contact with any others dealing with this problem.

ryan - 07/27/99 00:35:34
My Email:goodfella96@hotmail.com

Comments:
hey whats up.......nice page......i was born with CAH hydrox-21 (salt losing) in 1980 and it has been a long haul with a lot of bad and good experiences. its nice to see that you wrote a sweet page about this important thign in my life nad many others. lata, ryan

ryan - 07/27/99 00:33:40
My Email:goodfella96

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Chris Geertsma - 07/10/99 16:03:14
My Email:geertsma.freeserve.co.uk

Comments:
We are new to the internet. Chris was born in South Africa on 29 12 1987. He has CAH and is salt losing. He suffers from terrible headaches, sweats and battles with his weight!

sherri young - 07/08/99 21:49:28
My Email:youthx@sofnet.com

Comments:
my sweet cousin stacey, was just dxed with CAH--she's been placed on steroids & we're battling problems with weight gain...any advice???

John Congleton - 07/08/99 18:13:23
My Email:jconglet@westga.edu

Comments:
My son is 3 1/2 years old and has the salt-losing form of CAH. He was diagnosed at 9 days through the newborn screening program run by the state of Georgia. Without a doubt, the timely return of his lab results saved his life. Anyway, my wife and I hav tried to stay informed about CAH issues and we have so far managed Daniel's condition relatively well. There is one thing he's been having trouble with, though, and it's lack of energy. There are days when he tires out after very little exertion. Oth r days he seems very passive and has no real interest in playing with other (much more energetic)children. Daniel's endocrinologist doesn't seem overly concerned. Has anyone else experienced this?

Jenni Lackey - 07/08/99 00:13:10
My Email:fxr@powerup.com.au

Comments:
I have just found this site, which is great. My husband (Mark) and I have a 4 month old daughter, Grace. We live on the Gold Coast, Australia. Grace was disagnosed at birth with CAH, which came as a shock to us as we had never heard of it. Grace is do ng very well, we have not had a crisis yet (thankfully) and we are learning so much about CAH. We just connected to the internet, so we are finding sites like this very exciting and helpful. We would like to talk to any other families with young childre , and learn about how to cope with a crisis when it does arise and other issues associated with CAH.

Jami Rowles - 07/01/99 19:01:34
My Email:ladycinders@yahoo.com

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rebecca - 06/25/99 06:38:46
My Email:manners-corporations@excite.com

Comments:
hi there, hopefully u will get to read this. I am an 18yr old female from australia with CAH (salt losing) and was diagnosed from birth. this site was just one of many which give a graet overview of congenital adrenal hyperplasia.

- 06/25/99 04:49:32

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- 06/25/99 04:14:47

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Rachel - 06/22/99 01:20:59
My Email:rachel.roth@dartmouth.edu

Comments:
Hi,I'm 19 and have have just been diagnosed with a mild case CAH. I am taking .25 mG of Dexamethasone. One of my physician's recommended getting a medic alert bracelet to notify doctors of this. Do you recommend this? Thanks a lot!

melissa - 06/08/99 03:19:53
My Email:micebike@aol.com

Comments:
I'm 18 and have had CAH since birth. I had never really realized so much info. on CAH was on the web, but i would love to talk w/ others who have the same prob. or help w/ any q's.

Mary L - 05/29/99 16:14:41
My Email:Laugesen@worldnet.att.net

Comments:
I have a 15 year old son with CAH and was interested in contacting anyone with teens with CAH.

Marie V. Reyes - 05/26/99 14:32:10
My Email:cwded@coqui.net

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rachel - 05/19/99 21:37:04

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Kimberly - 05/15/99 05:47:21
My Email:Rood@fast.net

Comments:
I wanted to sign in.

Jennifer Leeds - 05/14/99 09:25:21
My Email:k9lady@us-netdirect.com

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paul pahoresky - 05/11/99 20:25:41
My Email:ppahores@ebni.com

Comments:
I have 21 hydroxy deficiency and am a 32 year old white male. My wife and I are trying to have children and are not successful to date. Is this related to my condition?

Alice P. - 05/08/99 03:16:54
My Email:Apoli29387@aol.com

Comments:
We have a four year old girl with CAH named Chelsea. I have been just recently exploring the different sites. Nice job!

Tammy Renee Pryor - 05/05/99 02:22:49
My Email:sisneytrp@juno.com

Comments:
I am a 28 year old with CAH. My mother and her identical twin sister also have CAH.

DENISE CATRIER - 04/29/99 02:25:50
My Email:deedee@northnet.org.

Comments:
MY SON JORDAN IS 6 YEARS OLD HE HAS BEEN GROWING SO FAST

Drew - 04/25/99 22:03:55
My Email:Migahi1@aol.com

Comments:
I am an adult male with CAH and Klinefelters syndrome. I am seeking a site where I can find others to relate to . I was gender abused and raised female before finding out I was male only 12 years ago. My life has to say the least been interesting. Tha k God for sites like this where we can all relate in one form or another and we do not have to feel so alone. I have had chest surgery to remove excess skin and tissue and had to have malignant testes removed from my abdomen. I am engaged to be married, but have many unresolved emotional issue regarding my medical situations and fear it could cause difficulty in our relationship. Angela is very important to me so I am seeking help from every direction-please feel free to contact me with any advice or co ments. I would appreciate it. Again, thanks for a site we can all share-Drew

Chris n Tarrah - 04/25/99 01:41:14
My Email:concerning@webtv.net

Comments:
We just would like to thank you for your site and helping us understand more about CAH which our newborn daughter was diagnosed with.If anyone would like to chat or send us anything about CAH please feel free to write us at Concerning@webtv.net

DONNA BROE - 04/24/99 04:40:25
My Email:dmbroe@webtv.net

Comments:
I HAVE A GRANDDAUGHTER, KAYLEIGH, BORN 5/11/95 WITH CAH IN THE SALT-WASTING FORM. WITH GOOD CARE FROM HER MOTHER, SHE HAS BEEN FOR THE MOST PART BASICALLY HEALTHY. SHE SUFFERED A CRISIS IN DEC.1996 AND SHE ENDED UP IN THE HOSPITAL FOR 5 DAYS WITH A SINU INFECTION THAT WENT OUT OF CONTROL BECAUSE THE DOCTOR TOLD MY DAUGHTER SHE WAS "PARANOID" WHEN SHE KEPT BRINGING KAYLEIGH TO THEM. NEEDLESS TO SAY, SHE HAS A NEW PEDIATRICIAN NOW.

Marilyn Willhoit - 04/23/99 20:26:25
My Email:mwillhoit@se-tel.com

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C.L. Wright - 04/21/99 03:13:48
My Email:wright@deltanet.com

Comments:
I would be interested in any information re:CAH. I have been on Cortef and Florinef for most of my life. Overall, I do well, but have periods of fatigue. - CLW

Fiona Perry - 04/20/99 06:17:30
My Email:fperry@mt.net.au

Comments:
Many thanks forputting together such a great resource. I am 42 with CAH diagnosed at age 5. At that stage Doctors were GODS and was unable to get info. Now with the electronic age are able to access so much info. In the past 12 months I have learnt so muc . I really find having the message boards as a forum a great help for learning about problems and how people have overcome them. Many thanks once again. God Bless Fi.

MICHELE HARRINGTON - 04/20/99 02:00:40
My Email:t.e.harrington@worldnet.att.net

Comments:
THIS IA A GREAT SITE. IT IS SOMETHING I HAVE BEEN LOOKING FOR MONTHS. THANKS ALOT...

MICHELE HARRINGTON - 04/20/99 01:20:01
My Email:t.e.harrington@worldnet.att.net

Comments:
THIS IA A GREAT SITE. IT IS SOMETHING I HAVE BEEN LOOKING FOR MONTHS. THANKS ALOT...

Deb - 04/14/99 01:13:31
My Email:manders@ismi.net

Comments:
This is wonderful. My CAH daughter is 13 now. I sure wish I had this information and support when she was young. I spent many a sleepless night listening for her to wake up and be sick. I will be a regular visitor to your site. Thanks Deb

- 04/11/99 21:20:38
My Email:jusjus@gateway.net

Comments:
i delivered a little boy named gavin in dec. of 1998. 5 weeks later he was diagnosed with 21 hydroylase. never in my life had i heard of this. i am 23 years old and i have never had a traumatic expierience happen to me like the one i had when the doctors old us about gavin's condition. he was admitted to the nicu for phnemonia and it just so happened that some tests came back with his potassium and sodium levels severly unbalanced.i feel that it was a blessing in disquise that he had phnemonia. they would ve never found his disorder if it weren't for that and something unthinkable may have happened to my little boy he is almost 4 months old now, and he is doing great. i thank god that there is treatment for things like this and that my son can have a healthy, happy life. i'm also gratefull for websites that offer updated info on the illness and other parents that ar in the same world as me.

- 04/11/99 21:17:37

Comments:
my son has 21 hydroxylase dificiency. he is only 3 months old and i am still learning a lot about what the disorder is and what i need to do to care for my son.

Kate - 04/05/99 14:05:53
My Email:eaglesoarsalone@hotmail.com

Comments:
My sister recently gave birth to premature twins and one of the babies CAH tests came back positive. We are still waiting for the results of the retest. My question is, is it possible for just one baby to have it when they are IDENTICAL twins? The other baby's came back negative. My sister isn't presently online but I've told her about this wonderful sight and I will keep her informed of any new info I find. If anyone can answer my question please email me. It would mean a great deal to me. Thank you.< r>
mr.& mrs. harry - 03/30/99 01:52:32
My Email:samfam@paralynx.ca

Comments:
Hello Mrs. & Mr Harry is my aunt & uncle we all live in the lowermainland of British Columbia Canada. They do not have a computer and know no one else with children with cah they have a 3 yr old and a 7yr old both boy and I guess would just like informat on and to know that they are not alone. They have delt with this situation for a long time and are very much undercontrol but probably would like to have support from other parents that have children with this condition and any other advice they could re eive and share. I will be sending messages for them because they do not have a computer one day I will have the boys over and them and they will play on the computer if you could please tell me what is a good time to chat on the chat room. Thank you I w uld love to help them. Please email any information you can samfam@paralynx.ca thank you lisa I am not sure if my email is correct my husband just changed survers but if it is wrong I will add another entry

mr.& mrs. harry - 03/30/99 01:50:12
My Email:samfam.paralynx.ca

Comments:
Hello Mrs. & Mr Harry is my aunt & uncle we all live in the lowermainland of British Columbia Canada. They do not have a computer and know no one else with children with cah they have a 3 yr old and a 7yr old both boy and I guess would just like informat on and to know that they are not alone. They have delt with this situation for a long time and are very much undercontrol but probably would like to have support from other parents that have children with this condition and any other advice they could re eive and share. I will be sending messages for them because they do not have a computer one day I will have the boys over and them and they will play on the computer if you could please tell me what is a good time to chat on the chat room. Thank you I w uld love to help them. Please email any information you can samfam.paralynx.ca thank you lisa

The Rice Family - 03/29/99 22:43:36
My Email:mosawe@yahoo.com

Comments:
I am addicted to this website. I log on every morning to read the new entries and respond to any that I can. Thank you so much for all the wonderful support and information. I have a 3 year old boy and a 2 year old girl, both with 21-hydroxylase severe salt wasting CAH. I also have a 6 month old boy who is not affected. We live in Maryland and would love to network with other families in our area.

Kay - 03/16/99 15:26:04
My Email:ElboGrease

Comments:
I am a 16 year old from Illinois. I was looking through some sites in order to do a project. I am sharing some of your stories with my class. I have reasearched much on the affects of this disease and I wish everyone who has it the best of luck and may god by on their side.

shelly Scott - 03/15/99 17:40:50
My Email:screech926@aol.com

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Andrea Heinen - 03/09/99 01:54:33
My Email:3boys@quicknet.net

Comments:
I have a perfect beautiful 2 year old with 21 hydroxylase CAH - salt losing. His name is Connor. NC has state screening for CAH but unfortunately his #s were elevated but the state lab sent a "negative" report to the pediatrician. At 16 days old, he was admitted for failure to thrive. Thank God the Dr's ignored the state screen results and transferred him to UNC Children's Hospital for treatment. We came close to losing him. He has done well on his Cortef and Florinef, but illnesses are certainly frighte ing. I am constantly looking for info and love this webpage. He has been designated ambassador for the March of Dimes in our county. We are raising money for research, research, research! He is wonderful and has made me savor every moment with him and y 2 older boys-ages 8 and 10. I feel honored that God trusted me to take care of Connor. He is a miracle.

Andrea Heinen - 03/09/99 01:06:22
My Email:3boys@netquick.net

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Esther - 03/08/99 16:27:19
My Email:hester@teleline.es

Comments:
Hello! We have a little boy of three with CAH,his name is Martin, we live in Spain and my husband is from England; we would like to know more about this illness and talk to families with the same problem.

Deborah Oney - 02/22/99 17:37:40
My URL:http://members.aol.com/debbieoney/blood.htm
My Email:DebbieOney@aol.com

Comments:
Very informative website. I learned a lot, especially by reading the guestbook entries.

eva r. jones - 02/21/99 21:05:53

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Jennifer & Jeff - 02/18/99 03:12:48
My Email:jjtcummins@aol.com

Comments:
Just finished reading this great website, and have written email replies to many of the entrants. We are the parents of a two month old son, diagnosed with CAH (salt wasting) when he was nine days old. Also have a two year old daughter. Would love to hear from anyone willing to lend information or offer support. Think a book about this is long overdue, and I am willing to write it! What do you think? Parents, PLEASE keep in touch with your experiences, and I will try to keep my resources current and will p ss along any information as this subject is dear to my heart!

yens & Jesi Schwab - 02/15/99 00:04:06
My Email:weirskiers@torchlake.com

Comments:
Our daughter was born August 23, 1998. Our midwife had delivered a baby with CAH 9 years earlier and new what Heidi had right away. She is salt losing, but is doing really well. God has blessed this little girl with such great health. I would recommend for new parents to breastfeed for as long as possible, this will get you off to a good start. Also if you have problems with candida, which is common for anyone on steroids, try taking grapeseed extract and the herb Pau d' arco this has worked well for u . also we were told by a holistic ped. to rub 1/2 tsp. evening primrose oil on their chest once a day. This will help for any inflamation and prevent it. Have a relativly good diet with lots of fresh fruits and vegetables, and garlic!!! This is a wond r drug created by God. To help our children do the best is to keep them from getting sick!! Recommended reading would be anything put out by the Bragg's, ask at your local health store. The most important part of your diet should be Jesus Christ who br ngs eternal life in heaven. "We can do all things through Christ Jesus who strengthens us." Heidi is doing really well. She will have surgery this coming May, so please keep her in your prayers. If there is any one in the northern Michigan area we wo ld love to here from you, or anyone for that matter. God Bless You. Yens, Jesi and Heidi Angel Schwab

Liz and Andy - 02/13/99 12:51:13
My Email:andyh@picknowl.com.au

Comments:
I have a son, age 6, with CAH (21 Hydroxy). I also have a niece and nephew with the same. The geneticist said it would never happen twice in the one family (wrong!).

Tom Kruesel - 02/11/99 04:21:08
My Email:tomk@cpcn.mb.ca

Comments:
Thank you for putting this information together! We will be telling others we kow who are dealing with CAH. This is a great resource.

Tom Kruesel - 02/11/99 04:20:25

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Michelle Brinson-Agne - 01/31/99 20:04:51
My Email:Agne@MindSpring.Com

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Mrs. Pam Anderson - 01/31/99 08:25:49
My Email:grizz@nethop.net

Comments:
As a concerned auntie, I think this is a great section that you have started. Thank you!

Baiba Spangler - 01/25/99 05:04:11
My Email:BaibaS@aol.com

Comments:
I have a 7 year old daughter with salt-losing CAH (21-hydroxylase). What a great site to find!!! My daughter is brilliant, gorgeous, full of life and I am thankful on a daily basis for this treasure. She was diagnosed at 2 hours because of a very brillian pediatrician. She spent her first 8 days at Vanderbilt in Nashville and has had two surgeries since then. We now live in Georgia. She has not had any crises other than when she got rotovirus at age 3 (bad for a kid with CAH). Her only problem is psycholo ical in that she is terrified of doctors, all of them. She does not like the sight of blood, nor needles, nor white coats. I am sure this is due to her constant exposure to the medical profession. Any parents in Georgia (Lawrenceville, Atlanta area) who w uld like talk, please e-mail! Would love to hear from you. I almost cried reading all the postings. It is comforting to know that there are other folks out there who go through this on a daily basis. Luck to all!!!

Rosie Armenta - 01/14/99 14:14:30
My Email:critianjovani@msn.com

Comments:
I am still crying to know that I can finally express what I feel as a mother about my little girl

Donna Ivey - 01/07/99 15:29:30
My Email:Divey@dttus.com

Comments:
I have CAH salt loser variety, diagnosed in 1962 at Texas Childrens Hospital, Houston. I am currently 36yrs and happy and healthy. I just wanted others with CAH children to know that some of us that were diagnosed many years ago are happy adults living a normal life. Due to the severity of the salt losing I did several genital surgiries to correct the abnormalties.

alyssa janelle - 01/03/99 01:07:58
My Email:djane@bit-net.com

Comments:
Our daughter is now 2.5 years old being diagnosed with salt-wasting CAH at birth in Worcester, MA. She has been in excellent health since. She has had 3 major surgeries and 3 cystoscopies. She continues to amaze us with her bounce-back ability. We have si ce moved back to N.H. and would love to talk to you.

PATSY KENDRA - 12/15/98 19:54:59
My Email:GARRY@garry.freeserve.co.uk

Comments:
HELLO MY NAME IS PATSY AND I LIVE IN THE UK. I AM 25 YEARS OLD AND HAVE CAH. I WOULD LIKE TO HEAR FROM FELLOW SUFFERERS OF A SIMILAR AGE GROUP TO SHARE THEIR EXPERIENCES OF THE DISEASE.

the wright's - 12/08/98 06:07:14
My Email:spwright@juno.com

Comments:

the wright's - 12/08/98 06:05:31
My Email:spwright@juno.com

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Juliette - 11/06/98 18:59:07
My Email:jpz15@hotmail.com

Comments:
This guestbook is a wonderful way to get people talking to each other. I was diagnosed with CAH just this week -- I'm a 24 year old woman and had been telling doctors for years that SOMETHING was wrong with me -- and never being taken seriously. I've be n searching the net for information, and have only been able to find information about babies and young children with CAH. Does anyone have any information (or ideas for how to find it) for adults with late-onset CAH? I'd appreciate any thoughts, contac s, support, etc.

Kym Patino - 10/28/98 21:15:59
My Email:toptrips@sonic.net

Comments:
I have a 12 week old with CAH the first few weeks after I brought him home from the hospital I thought I can't do this well it's been 2 months now since I've had him home. And now I have no problem with it. However I would like to speak with other parent of CAH children.

TONYA GREENELL - 10/28/98 10:56:17
My Email:jeff2tonya@aol.com

Comments:
I WANTED TO UP DATE,JORDYN IS 14 MONTHS NOW AND WE HAVE ALSO DISCOVERED SHE HAS A TUMOR ON HER RETINA(AND ONE ON HER PINEAL GLAND.)DOES ANY ONE KNOW OF SOMEONE WITH THIS?SHE ALSO HAS CAH.

TONYA GREENWELL - 10/28/98 10:51:33

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DEBORAH HOARE - 10/16/98 13:20:29
My Email:805680D@bilk.ac.uk

Comments:
Very useful, didn't realise any one kenw anything about my condition!!!

Julie Sandschafer - 10/05/98 03:03:27
My Email:kjnsandschafer@frs-l.com

Comments:
I enjoyed your website very much. My 2.5 year old son has CAH. We are thinking about trying to have another child next summer. It was fun to read something so family-oriented. Thank you!

10/04/98 10:41:08

Name: Bad Bunny My URL: Visit Me

My Email: Email Me

Comments:
Nice page. Very informative. Keep it up.

Amanda Glidewell - 10/01/98 18:12:04
My Email:amanda.glidewell@truetemper.com

Comments:
I have a 2 1/2 year old little girl diagnosed with CAH at birth. We have been getting along great with our medications and living a normal life. But we are having a very difficult time learning to be potty trained. Any advise or stories to share??

Tammy - 09/23/98 17:36:36
My Email:ruschpa@netINS.net

Comments:
Hi! I have 2 sons that have CAH. They are 17 & 15, I also have one son who is 15 and does not have CAH. For 17 years I have felt very alone in this disease, until today when I found this site on the internet. Thank you! I have been through a lot with my sons, including last year when my 17yr forgot one day to take his meds and then decided he didn't need them. Needless to say we found out but only after MUCH had happened. We almost lost him again. If anyone wants to talk please feel free to contact me I feel like a pro at this point. Even my doctor said I keep better records than they do and know more at times. If anyone is from Iowa and has a kid/s with this please contact me, too. Thank God for this site!!

Pamela Roberts - 09/21/98 07:46:34
My Email:LadynNash@AOL.com

Comments:
I have been reading some of the comments on the message boards. I have CAH myself and currently going untreated due to no insurance. I am scared to death. I recently had to see a doctor because of the muscles aching in both arms and both legs to the poi t of tears. So, again I am going through the testing process under a new doctor. Anyway, I never knew that CAH could cause this pain and was surprised to find out that could be my problem. I have not seen my endo in several years now and has been about t at long since I have taken medication. In the meantime, I have neuropathy in both legs and feet, so this so intensifies the pain. I have never experience this before. About 2 weeks ago, my body started aching and it was almost like the pain was radiatin through my body. It scared me so bad that I knew that I had to see a doc, insurance or not. I am hoping that they can treat this. However, I am confused. I have been diagnosed with CAH, but when telling the new doctor, she said, "Oh, you have Cushing Di ease". Isn't this 2 types of problems? If so, which do I have? I am so frustrated. I'm sorry for going on and on, but I would like to thank you for all the information and the hard work that you have put into the web pages... Thanks again... Pam

karen - 09/21/98 01:55:49
My Email:BRJRNKLR@fast.net

Comments:
I have an 18 year old daughter with CAH since birth. We just got the internet and what a wealth of information is here!! I have never had support from other Parents with children with CAH. Our only support has been her doctors and family. Hope I may support others. Thanks!!!!!

Danielle - 09/18/98 16:59:58
My Email:iblb@worldnet.att.net

Comments:
I have an 8 year old daughter with classical CAH. I would like to talk to anyone who has begun Lupron treatments.

- 09/18/98 16:55:24

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Vicky - 09/17/98 21:51:20
My Email:vwhite@moosebird.com

Comments:
I am 39 and was diagnosed with CAH about five years ago. I had been having problems for over twenty years but no doctor could tell me what was wrong. It was better when they gave me a name so I could understand more what was going on and what I could do o help in conjuction with my meds.

tammy - 09/17/98 16:53:12
My Email:kt.mccrie@sympatico,ca

Comments:
Thank-you for this great page. I would like to talk with others as I have a healthy seven year old boy with salt losing cah. Anyone from Canada?

Sonny and Rie - 09/15/98 23:20:49
My Email:ligedy@yahoo.com

Comments:
Our son Kai was diagnosed with CAH two weeks after he was born. He had two seizures before he was diagnosed. Kai is now 4 months and is doing well. We are in the military and will soon be transfering back to the states. We are a little concerned about the treatment that will be done in the states. Kai is doing well now and so far is progressing normally. We hope to be going to Hawaii after this and would appreciate any info or input concerning this condition. Thank you! talk to you soon.

Sonny and Rie - 09/15/98 23:17:57
My Email:ligedy@yahoo.com

Comments:
Our son Kai was diagnosed with CAH two weeks after he was born. He had two seizures before he was diagnosed. Kai is now 4 months and is doing well. We are in the military and will soon be transfering back to the states. We are a little concerned about the treatment that will be done in the states. Kai is doing well now and so far is progressing normally. We hope to be going to Hawaii after this and would appreciate any info or input concerning this condition. Thank you! talk to you soon.

Sallyann Blackett - 09/08/98 12:36:50
My Email:sallyann.blackett@capgemini.co.uk

Comments:
As a relatively new parent of a CAH being treated at a hospital where he is the first CAH patient it is interesting to see comments from others who are dealing with the problem.

Ann - 08/31/98 00:05:23
My Email:alexsean@pacbell.net

Comments:
Hi, I have a 5month old daughter who has CAH Salt Wasting, I'm looking to contact someone in CA. SF Bay Area to talk to, or anyone who can help me understand more about this disorder. I also have 2 older boys that are not affected. This is a great resourc & I look forward to hearing from someone soon. Please feel free to email me w/any comments or questions. Thanks a Bunch Ann am so happy that I found it. Keep up the good work.

angela - 08/26/98 00:56:51
My Email:alkpowers@hotmail.com

Comments:
Sorry, I gave my wrong email address earlier

Angela - 08/26/98 00:09:03
My Email:alk@hotmail.com

Comments:
I have a 2yr old daughter born with CAH (salt losing). She has had two surgerys and will need another when she reaches puberty. I live in Canada and I would like to hear from anyone else in this area who has CAH in the family. I'm glad to see that there are so many successful stories out there. To think that two years ago I thought that my little girl was the only one who suffered from this!!! This information is great, I'm happy I will be able to share it with her as she gro s up.

Faith Garcai - 08/21/98 05:31:22
My Email:FEG30@aol.com

Comments:
I am interested in information about CAH and infertility. If you find any, send it my way. Thanks! :o)

Tonya Greenwell - 08/14/98 01:18:56
My Email:jeff2tonya@aol,com

Comments:
1 YEAR OLD DAUGHTER WITH 21 HYDROXYLASE NON-SALT WASTER.AND ALSO A TUMOR ON PINEAL GLAND.ANY ONE ELSE HAVE BOTH?I WOULD LOVE TO TALK TO YOU..

john coombs - 08/03/98 22:59:36
My Email:herbco@umich.edu

Comments:

Jeanne - 08/01/98 15:25:56
My Email:mjdaelf@aol.com

Comments:
I have a daughter who just turned 4 years old with CAH-Salt Wasting. She is doing wonderful now. We had some scary times when she was younger-but it's getting better! We just came back from the Magic Foundation Conference last week and had a great time alking to others with CAH. I would encourage everyone to attend.

Kathryn Walker - 07/22/98 13:27:05
My Email:andrewwalker@earthlink.net

Comments:
Hi, I have a 15 year old son with severe salt losing CAH (21 hydrox.). We almost lost him at 10 days old. He has the bone age of a 19 year old and probably has reached his full growth. Often, it is hard to know if he is having problems with his cortef evels or if it is just the "teenage" thing. Hope to hear from others with this dilemma. It is good to know that so much progress has been made in just the last ten years or so with the treatment of CAH. Good luck to all.

sharon - 07/07/98 04:17:03
My Email:sharonjensen@ibm.net

Comments:
We have adopted a little boy born 10/96 who has 21-hydrox. salt-wasting CAH. He is unusual in that he has a delayed bone age and very little appetite. He has had respiratory problems which we hope he will outgrow. He went from 70% for height and weight to below 5% in one year. Anyone experienced anything similar? Thanks, Sharon

Jennifer - 07/02/98 19:18:15
My Email:jennrob@ix.netcom.com

Comments:
Wow! I'm overwhelmed. I was diagnosed with CAH at the age of 19. It was a shock. I had gone to a dermatologist and asked about acne. A few months later I was at a top endocrinaologist and learning about CAH. I am 30 now and I don't have many problems from it, except for the extra hair and a few other things. I used dexamethasone for about two years but the side affects were worse than the problems. My husband and I decided to start researching CAH and get some testing done so we can start a family in the next year or so. I must say, I am very frightened and worried as to what I might be passing down to my children. You all seem so courageous. Did you know you had the disorder or were carriers before you had children? What kinds of testing and know edge would you recommend?

Margaret - 06/25/98 10:00:09

Comments:
Hi. My name is Margaret and I was born with CAH. I suffer from both classical and non classical 21 Hydroxalyse defficiency. It is hard to deal with this disease because it has caused Masculinazation in me when I hit puberty. Alot of mental strain has c me from having this disease and because of the genitialia disorder that came along with it, finding a suitable mate is difficult. I have very little to no support since I am a single 20 year old women. None of my family suffer from CAH so they don't kno what it is like.

soozan and Todd - 06/06/98 21:49:56
My Email:Soozantodd@aol.com

Comments:
We have a 9 month old daughter who just went through corrective surgery. She did very well. Since the day she was born we have not had a moments rest! Living with the constant anxiety of whether or not she is ok; is the medicine working. What is going o happen when she gets older... It all gets a bit stressful! I'm glad that there are sites such as this one that connects us with others that are going through the same things. We are in the process of forming a CAH support group in the Detroit area. There are about 5 families so far. Anyone interested in this area please feel free to contact us.

Nicole Rice - 06/05/98 10:42:27
My Email:DNRatGRF@aol.com

Comments:
I am finally connected!!!! I have 2 children with 21 hydrox. deficiency. My oldest is 2 1/2, and my youngest is 1 1/2. Please feel free to ask me anything-I have been through it all. I'm happy that I found you.

Rebecca Poedy - 05/19/98 03:53:18
My Email:poedyr@aol.com

Comments:
My husband and I have a nearly 6-year-old daughter with CAH....and this disease continues to boggle my mind sometimes....have been searching for support and other parents with children with CAH as sounding boards....we love our little Brittany more than a ything in the world and cherish every second we have with her.... :-)

Judy Lesko - 05/14/98 18:21:24
My Email:oksel@usachoice.net

Comments:
Hi! I have a 2 year old daughter with CAH (salt wasting). Her CAH is 21-hydrocolase. I would really like to hear from any other parents who have girls with Karee's type of CAH. Thanks!

Lisa Pultz - 05/13/98 16:26:24
My Email:david_pultz@fmc.com

Comments:
We have a son, 15 months old, who was diagnosed with CAH, Salt-wasting form when he was 6 days old. Thank goodness for the NC State Screening Program. He is doing great! My biggest concern is that he is a bit small, but we're working on it.

TANYA LEWIS - 05/12/98 18:17:10
My Email:tanya_louise_lewis@which.net

Comments:
I have CAH and I'm 21. It does get better.

Erica - 05/10/98 04:04:45
My Email:e.bann@sympatico.ca

Comments:
Hi there, It is so wonderful to see a cah site. It is something that is not seen hear in Canada. Although, I hope to create one soon. I'm not to quite sure one how to do go about doing that, but I will get help. And I will get that to you as soon as possible. I'm v ry anxious to meet other cah families.

Carol Dziuba - 05/03/98 00:00:18
My Email:cdziuba@bellatlantic.net

Comments:
Hi. My sister lost her baby girl at the age of 5 days. Now, 3 years later, she just had another baby girl, and it looks like she has CAH, diagnosis to be finalized this week. She has a healthy 2-year-old boy w/ no symptoms. I'm hoping to hear from any ody who can reassure me. The first baby had sodium and potassium levels all screwed up. She went into cardiac arrest and died. She was dehydrated when brought to the hospital. Thank God I found this website. Hoping to hear from anybody.

diana - 04/26/98 23:58:23
My Email:beller2indy.tds.net

Comments:
Hello, I have a friend who has a son with C.A.H. He is l3. She is having a lot of problems. We wrote somewhere on some of the C.A.H. pages under Rita. Now we can't find the page we were on and I have had no answers. She is very frustrated and feels ery alone. She would like to talk to other parents. I have just found the chat schedule----we will try that. Ben is having a lot of emotional problems and is very angry. Rita wants to get input from other parents. Thank you---where ever you are.

Robbi Converse - 03/23/98 19:27:32
My Email:robbicc@radia1.com

Comments:
I feel that I have been given my sanity back! I have been asking my son's doctor for years about his headaches, low energy, weight gain, etc. and have been told that they are unrelated issues. I have searched the internet for at least a year with no goo hits. Now I have found several sources of support information and all of these issues appear repeatedly! I am so excited to finally have some backup in my opinion that my son's complaints are CAH-related. Unfortunately for the doctors, I am armed for he next appointment!

amy jasper - 03/14/98 22:30:46
My Email:jasper@arro.net

Comments:
thanks so much for this info on CAH. my daughetr was diagnosed sortly after birth and is doing well. she is now almost 3. best wishes to you and yours.

Patty Mcguire - 03/06/98 20:10:25
My Email:pmcguire@dvdol.com

Comments:
I have a 12 year old daughter,with salt wasting form CAH. She is currently enrolled in research at NIH,Bethesda Md.

Hallie - 03/03/98 00:40:26
My Email:dcipic@usaor.net

Comments:
I have an adopted daughter who's birth mother has CAH (also one sister affected, two brothers not). My daughter does not have the disease. I am seeking information on this subject to explain to her when she is older as I believe she could be a carrier of he gene.

Michael McHugh - 03/02/98 07:43:03
My Email:mchugh.connexus.net.au

Comments:
Great set up. I am looking for a good web page.

Patrick Joy - 03/02/98 00:11:18
My Email:wajoy@cancom.net

Comments:
I have a 2.5 year old son with C.A.H.(salt waster), he was diagnosed at the age of 5 months, at which time he was in a severe crisis. Thanks to the quick thinking of our family doctor and the staff of the Janeway Hospital he is now leading a normal life. I am glad I found this home page about children with C.A.H. Would like to hear from anyone re: support programs, additional info., or would like to share some experiences.

sandy nunez - 02/28/98 03:45:23
My Email:jan2392@aol.com

Comments:
Have six year old son with CAH. Have excellent doctors but have question....is limping and can't find reason after several tests. Bone age did indicate age of 8 yrs. old.....Heard this problem before?

Edward F PAul III - 02/25/98 03:45:14
My Email:Medic1320@aol.com

Comments:
I have a 10 month old son with CAH salt waster

Brenda - 02/25/98 00:48:54
My Email:Bren123273@aol.com

Comments:
I am sorry i didn't put my full e-mail address in the first time so here it is please contact me with any news about the older problems. Thank You

Brenda - 02/25/98 00:44:32
My Email:Bren123273

Comments:
I am a mother of an 18 year old male with CAH salt losing. I was wondering if any one would contact me with any of the older side effect of this problem. For all of you parents with the younger ones I will think of you since we have all been there I oft n think of the kids who are going thru it now. But it does get better! Just hang in there and dont be afraid to contact some one for support.

Brenda Morgan - 02/25/98 00:31:33
My Email:bren123273

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C. Messex - 02/23/98 18:43:58
My Email:messexcl@maritz.com

Comments:
I have a 10 month old daughter CAH and she is doing quite well. I'm interested in as much information about this disorder as possible. I've been searching for information and I have felt a little discouraged.

Clarissa - 02/18/98 23:01:05
My Email:Southerngas@msn.com

Comments:
I am looking to meet people who have children with CAH. I have a 5 year old with it.

Tracey Tayler - 02/18/98 20:10:33
My Email:tayler@krohne.com

Comments:
My son is 4 years 2 mnths old. We first learned that he had CAH when he was 7 days old. We have had two Endro specialists, and the first offered us little support. We live in Lynn, Ma. Just outside of Boston. We hope to learn more about CAH thru contac with other families. I look forward to any replys. Tracey Tayler

Becky Grabeel - 02/17/98 21:33:09
My Email:Becky_Grabeel@amrcorp.com

Comments:
I just discovered this web page. I have a daughter who is 18 years old. Would love to talk to someone who has a daughter around that age or older.

kathy odham - 02/14/98 15:23:48
My Email:BraileyO@AOL.com

Comments:
I have a son who is 9 years old with CAH. He has the severe salt wasting form. We go for treatment at NIH in Washington DC. I would be interested in talking to other parents who have affected children.

Roberta Preston - 02/06/98 01:42:42
My Email:preston@kreative.net

Comments:
Update on my pregnancy: results from the genetic testing (CVS) is in and its going to be a boy with CAH. So I weaned off the dexamethosome. All the chromosomes are normal - no birth defects. He is due after 10 July - no later than 24 July. I have one son, Stephen 12/22/93 with CAH. And one little angel (died from CAH crisis and staf infection on 9/1/97) born 1/17/95 she was 2.5 years, Jessica.

Beth Duffy - 02/04/98 18:03:54
My Email:beth_duffy@ml.com

Comments:
Also, my home e:mail is duffy@home.com, the above address is at work. I think what you are doing is great as I have nobody to talk to that understands (besides my husband). Keep up the good work. Beth

Kathy Marshall - 01/24/98 02:57:19
My Email:kmarsh8669@aol

Comments:
I have a 3 year old daughter, Katy, with CAH, non-salt losing form which was diagnosed at birth thanks to the screening done by the State of Georgia. Would love to correspond with any other CAH parents.

Greg & Sue - 01/18/98 07:46:22
My Email:Riddiroof@aol.com

Comments:
Hi I'm Greg and I am the uncle to Mathew who is 14 months old and has non salt wasting CAH. My sister sue is looking for insight into insurance problems and solutions seeing as they are privately insured and recently Mathews insurance raised 3 times his riginal rate and they are having a time finding new insurance. This board gives us great hope to know ther are so many people out there willing to help.

KIM TOWNSEND - 12/29/97 03:25:25
My Email:jktownsend@coastalnet

Comments:
I HAVE A SON WHO IS NOW 7 YEARS OLD WITH CAH 21 HYD. THERE HAS BEEN MANY SCARY TIMES THRU THE YEARS AND I'M SURE THERE WILL BE MANY MORE. RECENTLY WITH ALL THE EXCITEMENT OF CHRISTMAS HE HAD ADRENAL CRISES. A PHENERGAN SUPPOSITORY CAN SOMETIMES GET YOU VER THE HUMP WITHOUT HAVING TO GO TO THE HOSPITAL. I AM GLAD I FOUND THIS PAGE .

Penny King - 12/28/97 23:34:36
My Email:pking@surry.net

Comments:
This web page is wonderful. I found out my son had CAH the day before his 6th birthday. All and any info. on this disease is greatly appreciated. He had his 1st crisses this month. I was'nt aware that it was this serious untill it happened. I came home an found all this info on the net, and now I fill not so alone. Thanks, Penny King from N.C.

Jim Draper - 12/28/97 07:02:49
My Email:drapers@ricochet.net

Comments:
I have spent the last hour browsing this web site and would like to thank Debbie and her family for an excellent resource. Our daughter will be five in April and is a 21-hydroxlyse (salt loser). She was not diagnosed until she was 2, (her pediatrician fi ally ran tests after the pubic hair he said was normal did not go away). Her health is very good and we have had only a few "crises" over the last two years where Cortef injections were necessary. We are members of the MAGIC Foundation and find it very helpful and informative--(This web site was mentioned in the last MAGIC newsletter.. Happy new year and I look forward to future correspondence!

Andy Gibson - 12/21/97 22:59:27
My Email:pedestrianzone@msn.com

Comments:
Hi, I am a 25 year old guy with CAH. This page has given me pleasure and support with my condition. My sister also has the condition and my parents lost there first son 38 years ago. I would just like to say to parents of children with CAH that I have lived a perfectly normal and healthy lifestyle while taking my medication regularly. I am interested in hearing about problems us patients have had with infertility and any solutions that may have been found.

Heidi Postma - 12/18/97 02:25:32
My Email:jimheidi@hotmail.com

Comments:
Just wanted to let any of you parents of children with CAH to know you can E-mail me any time. I have an 18 yr. old son with salt-wasting CAH. Maybe I can help. I,ve been through it all. He doing great know, but I remember those years when he was litt e and how hard they could be. Please feel free to E-mail me!!!

Heidi Postma - 12/18/97 01:53:38
My Email:jimheidi@hotmail.com

Comments:
My son was diagnosed with salt-wasting CAH at the age of 21 days. He was very ill and it took doctors 4 weeks to diagnose him. We almost lost him several times. I have read the letters of parents with young children with CAH and I just relive those year all over again. My son is now 18 yrs. old and doing very well, but there were so many times over the years, that I did not think he would live to this age. If any of you parents want to talk, feel free to E-mail me any time. I know exactly what you ar going through. Keep the Faith!!!

Heidi Postma - 12/18/97 01:50:00
My Email:jimheidi@hotmail.com

Comments:
My son was diagnosed with salt-wasting CAH at the age of 21 days. He was very ill and it took doctors 4 weeks to diagnose him. We almost lost him several times. I have read the letters of parents with young children with CAH and I just relive those year all over again. My son is now 18 yrs. old and doing very well, but there were so many times over the years, that I did not think he would live to this age. If any of you parents want to talk, feel free to E-mail me any time. I know exactly what you ar going through. Keep the Faith!!!

Shereen - 12/16/97 19:17:22
My Email:reen@uniserve.com

Comments:
Boy ,it is wonderful what you can find when you are not even looking for it.I am 18 years old and have CAH.I was out searching the web on a totally unrelated topic and up this page popped.It is wonderful and I hope to chat with some of you in the in #CAH- hat.It's not to feel so alone anymore =) Shereen

Roxana Reagon - 12/10/97 04:28:17
My Email:leagle@axionet.com

Comments:
Thanks to everyone I contacted with regard to my daughter's symptoms of adrenal shock. Both of us are very grateful to all of you for your kind and informative replies. At the age of 26, she is probably one of the oldest CAH sufferers, but is "soldierin on" despite the hit-and-miss treatments she had as a young child. She is now well and living in Regina, Saskatchewan, soon to move nearer her brother (who is entirely unaffected) in Saskatoon. You're a marvellous bunch of folks. If I can be of any hel to any of you who are wondering what to expect as these wonderful children grow up, please let me know. Cheers!.....Roxana.

Christine - 12/08/97 00:38:51

Comments:
Hi! I have a 3 year old son with CAH, and I think this message board is wonderful! I have learned a lot from parents and children in the same situation! Thank you! I do not have e-mail, but I will check in as I can!

rdub - 12/04/97 03:28:24
My Email:rdub@vvm.com

Comments:
hello, we are the parents of a 20 month old boy with c.a.h. it is nice to know that their are other cases out there!

Susan T. Austin - 11/27/97 15:46:51
My Email:austi17@ibm.net

Comments:

dot gronn - 11/27/97 05:15:07
My URL:http://connexus.net.au
My Email:cahdot@connexus.net.au

Comments:
I have had many inquiries about our booklet, your child with congenital adrenal hyperplasia. The cost is $12+postage$3.=$15 Australian. Interested parents ,please send your bank cheque, or money order, to CAH Support Group c/- Treasure CAH Support Group 5 The Fairway Kingsbury 3083 MELBOURNE AUSTRALIA. As a parent you will find this booklet very informative Kind Regards DOT

J. Ricciardi - 11/25/97 22:37:00
My URL:http://www.geocities.com/SiliconValley/6531
My Email:ricciaje@aol.com

Comments:
Hello Again

Roberta Preston - 11/25/97 05:24:23
My Email:preston@kreative.net

Comments:
Pregnant My name is Roberta Preston. Thank you for your support in September for the lost of my little Jessica. She was 2 1/2 years old and died from an adrenal crisis and infection. She was my life. I am pregnant now. I also have a son Stephen, with CAH, date of birth, 12/22/93. I am taking the dexamethosome (1.5 mg three times a day) as soon as I missed my period. The CVS (genetic testing) will be done at the Fairfax Genetic Center, in Washington, DC on 26 Dec 97. I will know the sex and defects in 72 hours, but the DNA testing will go to Dr. New in New York City (Cornell) for the CAH testing. I would like to hear from all of you CAH parents again. Thank you.

Dyann - 11/18/97 20:05:50
My Email:RohrMP101@aol

Comments:
We have a son with Hypo-Plasia. We would like to hear from others with similar adrenal problems.

Valerie - 11/12/97 19:51:37
My Email:lril5458@URIACC.URI.EDU

Comments:
New to all of this I have a son Ben with CAH and appreciate any and all information. Especially would like information to share with the school about CAH and crisis.

Jill - 11/12/97 14:55:29
My Email:mojc726594@aol.com

Comments:
Thank you for this website~ thank you to everyone sharing that shares their experiences.

Sarafina - 11/07/97 15:00:05
My Email:aras@cyberway.com.sg

Comments:
this page really encouraged me to live the life I was born with and it ha also made me realise that I am not the only one living with such an illness. I would like to thank those involved in making this site possible.

Sara Barrett - 11/06/97 17:11:36
My Email:barrett@central-heights.isd.tenet.edu

Comments:
I have a 17 month old nephew with CAH. Thank you for the informative website. I will be sharing this with his parents.

Gabe T. - 10/28/97 22:09:57

Comments:
I think this is great and LONG overdue! My email is currently not fully operable, but I will try to keep in touch. Gabe

Vanessa - 10/26/97 07:58:31
My URL:/Hollywood/Lot/5984/main.html
My Email:tramanh@connexus.apana.org.au

Comments:
Wahey!!!! Fab page!!! This is a great addition to to the TT web :)

Vanessa - 10/26/97 07:58:26
My URL:http://www.geocities.com/Hollywood/Lot/5984/main.html
My Email:tramanh@connexus.apana.org.au

Comments:
Wahey!!!! Fab page!!! This is a great addition to to the TT web!

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