michelle: anxious of school
my 12 year old daughter has swcah and has always been scared of school this is like a phobia? has any body else experienced this??   thinking of home educating as she says she just cant go?
2  •  March 22, 2013, 4:09am
Danny Carlton (site admin): Board migration...
Within the next month or so we will be migrating the message boards over to the new social network platform at http://congenitaladrenalhyperplasia.raredisease.org/. If you go there (and register or log in) you’ll see that we already have several Sub-Communities...
February 23, 2013, 11:01am
catherine: pump
Does any one know if there is any trials going on for the pump in the UK particuarily in Scotland Many thanks
2  •  August 14, 2012, 5:35am
Megan: Yay.....the GOSH...
....got a BIG mention in the Olympic opening ceremony!
3  •  July 28, 2012, 4:38am
Mesha: Travelling to London From Australia
Hi everyone We are going to be visiting London in a few weeks from Australia with my son who is 10 and a salt wasting CAH. Can anyone recommend me which hosptial to visit should a CAH emergency arise? I am very sure that during our unfortunate short stay, 5 days we will prob be just checking out the sights around your beautiful city...
3  •  June 22, 2012, 8:03am
Natalie: 23 year old female with salt wasting cah and pregnant :-)
Hi all. I am a 23 year old female and me and my partner have jut found out that we are 8 weeks pregnant. I have always wanted children so we did plan for this to happen. It happened naturally as well and we didn’t need any help with IVF etc and I fell pregnant only 3 months after coming off the pill...
1  •  June 19, 2012, 1:38am
nicola: my 3yr old son just diganosed
Hi would love any information or advise as was told yesterday that my 3yr old son has cah he doesn’t have to salt loss one. My head is buzzing at the moment as so much to take in he has been put on hydrocortisone 3 times a day. He is fine in himself, worried about having children etc
9  •  June 15, 2012, 5:47am
Catherine: pump
I was wondering if there is many people with the pump in the Uk. My son is 24 and has been having a few worries the main one being the constant stomach problems. He was at the hospital last week and his consultant said that she did not know much about it but it must still be in the experimental state...
5  •  June 5, 2012, 1:20am
Claire Coupland: DLA rate?
Hello, I have applied twice for DLA my 3 year old daughter and have finally been successful on appeal. She was diagnosed last November (2011) and has already had 3 adrenal crisis resulting in needing the emergency injection and being rushed into hospital...
3  •  May 8, 2012, 3:44am
Stef: Cah & crowns & M E / chronic fatigue
Hi all, do any of your children have any of these combination of cah with crowns and M E. M daughter has 3 conditions and it took me long enough to get ver the fact she had cah 12 years ago. Help and advise from anybody
1  •  May 6, 2012, 2:11am
Cherrelle: 23 year old female
Hi I’m Cherrelle I’m a 23 year old female who was born with CAH I would like to talk to other people with this condition :) Feel free to reply back to me anyone :)
2  •  March 31, 2012, 8:30am
Louise: Guthrie Test
Hi :-) I am going to do my Guthrie test today. 3 blood to be done. Before my 7am Prednisolone, during the day and before 12 midnight prednisolone. I was wondering what time is best to do the ’during the day’ one? Thanx in advance This was posted in the main board also.
March 5, 2012, 8:00am
erica Callam and Mia Moody: Facebook
We have a women and men cah board if u would like 2 join look me up on Facebook Erica Callam!!!
1  •  November 27, 2011, 4:17am
Laura: chat
I am 30 and was born with nswcah. I have never met anyone with CAH. so would be nice to chat to other ladies with it. Feel free to email me on bunnykinn@gmail.com
August 29, 2011, 8:41am
Anna: has anyone tried the new slow release hydrocortisone called plenadren???
Hello, I have been doing a bit of research on this what sounds like fantastic new treatment for CAH, it is released in the USA and EUR, it is a slow release hydrocortisone called plenadren (made by duocort) that mimics the bodies normal cortisone output...
2  •  August 19, 2011, 8:09am
erica callam and Mia Moody: Facebook
This goes out 2 all the women and teenage girls with cah, swcah, and locah... We have a Facebook group just for US!!!! it is very private so the only way u can join is by adding me or Mia Moody 2 ur friends list... then we will join u 2 the group like i said it is very very private so what u post only u and the other girls on the page will c it...
1  •  August 11, 2011, 11:04am
Jenn: insomnia
I’m having a terrible time with insomnia. I was dx’ed with locah sept ’09 and put on pred. I take 2 mg in the morning and 2 mg at bedtime. I have strated taking 3 in the morning and 1 around 5 in the evening to see if that will help...
August 8, 2011, 5:26am
Chloe: Hydrocortisone injection
I’ve just been prescribed hydrocortisone injections for the first time. Any advice on how to do it would be appreciated. GP was pretty useless when I asked. I know it’s into the muscle, does it hurt?!
1  •  July 29, 2011, 11:16am
Chloe: More info on the pump? (Chris?)
I am 38 and have had SWCAH all my life. My doctor at the hospital seems a bit clueless about CAH and I don’t think he has many patients with it. I too feel that sometimes I have too much cortisol and loads of energy then the opposite a few hours later and I just want to sleep...
10  •  July 23, 2011, 11:16am
Amanda: CAH and Hypertrophic Cardiomyopathy
Has anyone been diagnosed with Hypertrophic Cardiomyopathy after taking medications for CAH?
6  •  March 1, 2011, 12:04pm