Living With Congenital Adrenal Hyperplasia or CAH

This is hopefully the beginning of videos about my life with CAH. Hopefully this video can be used to stir awareness about this often overlooked illness. This is open for questions and discussion and I want to help parents and CAH patients alike understand their illness or the illness of the child, while bringing light to the subject and hope for the future.

Category:

Nonprofits & Activism

Tags:

• CAH
• cah
• teens
• college
• life with CAH
• teens with CAH
• CAH video
• adreanal
• endocrinology
• adrenal disorder
• steroids
• hydrocortisone

[GiaMarieCarangi]

Hi Liz I am a 20 year old girl who was diagnosed at 14.

[uschelseagirl]

hi! Wow, that is a long time to go undiagnosed. What were your symptoms like? Do you have facebook? Feel free to add me!

[shouldbewritingpaper]

Thx for opening up the discussion.  It takes BRAVERY to openly share your story with the world. You importantly highlight the many side effects of steroids, including 'moon facies,' weight gain, and mood changes. I urge people who take steroids regularly to educate themselves about the side effects. Undiagnosed CAH is a common cause of infertility (see NYTimes article titled 'A Culprit in Infertility, Overlooked Yet Treatable.' Keep on sharing your story and spreading awareness!

[uschelseagirl]

you're very welcome :) I really enjoy speaking out about my disease-- it really is something often overlooked by everyone, including health care providers.

[waliddeeb1]

Hi Liz

I'm a doctor working in the UK preparing for upcoming exams for a registrar post. Un4tunately I havven't had the chance to listen to a patient's experience with CAH. Thank you for sharing this with the world. Wish you all the best.

[uschelseagirl]

you're very welcome! I'm glad this is helping you in your studies-- it means a lot to me!

[ForeverxNickyxLove]

Liz this is great! I support you all the way. Let me know if there is anything I can do to help you with promoting this or what not! Ily!

[mrsvickhen]

Just wanted to let you know I watched your video and I found it really interesting and helpful. I'm one of those parents you talked about - my daughter is 4 and was diagnosed at birth. We've had great medical care, but hearing from a "real, live" teenager with CAH is fantastic!! Thank you!

[micklo1]

Thanks for such a great vid....  I am an adult with CAH... Wonderful vid... Thanks.

[theweirdoshow123]

hi. i am a twelve year old. I have had CAH since birth.i feel the same way as you. When you said you took shot were they sulucortef? I am happy that u are making this video.

[TrufflesTheMushroom]

You're brave and adorable and I admire you.

Recently I've been publishing online fiction I was initially scared to tackle potentially triggering topics, but stories about people who have overcome disorders inspired me to create a main character with CAH. I did my research and even counted out the character's daily medication!

I just wanted to say that yes, you're not alone, and I will do my part to raise awareness and acceptance in the online community. You go, girl!

[sulli567]

Also I was wondering If there would b any1 who I could talk to a out this illness thanks

[sulli567]

Hi firstly I'd like to say tht ur videos are excellent. Also I jus want to say tht I have gt this illness since I was born and I am currently 19 years old. It can b hard at times with this illness

[Puffdaddystinks]

can this type of thing go unnoticed by doctors?

[leathermenace]

I'm glad to hear it is getting easier for the young people who are born with this disorder. I am only now learning that my gender issues may be CAH. I have no answers and about 100,000,000,014 questions. Tracking these kinds of issues down at age 50 without the truth to lead your way is nearly impossible. I have a birth certificate that was obviously changed from male to female and a life time of medical issues to wade through. Thank your parents for their honesty, believe me it helps a lot.

[babygirl201222]

hi Liz i have CAH to ive had it since i was born and im 22 now

[TrynaGetBacToMyLuv]

I believe I have been misdiagnosed with pcos I think I have non classical adrenal hyperplaisa. I had pubic hair at 3 YEARS OLD!! which is a symptom of non classical adrenal hyperplasia and not pcos.That right there shows the androgen came from my adrenal gland and not ovaries.But I am looking for natural remedies for it.

[AYUNA777]

Hi Liz. Thanks for your posting. I was wondering is anyone on internet discussion about CAH. And here you are :)

I'm 30 years old. With the non-salt wasting form of CAH. Diagnosed at age 7.

I'm taking Cortef 10mg.

Liz, do you know any organization who help patients with CAH in California? I live in San Diego.