Living With Congenital Adrenal Hyperplasia or CAH

[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.

[brad3000]

I really liked your video, it was great to see. I have 21-OH CAH. I was diagnosed at three weeks old and I've been on medicine ever since. People need to be more aware of people like us are going through, you go girl!

[CDMC1st2006]

hey Liz thanx for putting your experience with CAH up here i was just searching for some videos on CAH and i found urs very helpful i m medical student and tonight i going deep into it and u just go with ur medicine it will help u alot.. we will fight againts diseases.

[CDMC1st2006]

hey Liz thanx for putting your experience with CAH up here i was just searching for some videos on CAH and i found urs very helpful i m medical student and tonight i going deep into it and u just go with ur medicine it will help u alot.. we will fight againts diseases.

[CDMC1st2006]

hey Liz thanx for putting your experience with CAH up here i was just searching for some videos on CAH and i found urs very helpful i m medical student and tonight i going deep into it and u just go on with ur medicines it will help u alot.. we will fight againts diseases.

[gabrielreynajr05]

thanks for posting the video..my daughter was diagnose with CAH...ive done research about it understand it more

[CarolineJDillard]

Thank you for posting. Will remember to explain s/e of meds to patients. Nursing Student

[angelkiss]

Hi! Thanks for sharing.

I gave birth two weeks ago and my baby girl was positive of CAH when she had her newborn screening. We did a re-test and we have yet to find out whether it's really positive or not. I'm hoping and praying that it will be negative on the second test. :(

[hillz09]

Hi Liz!

I have not been diagnosed with CAH, but I do have similar symptoms. I was tested for Poly cystic ovarian syndrome, but it was negative. I have a very low self esteem due to all these weird symptoms. I have a large amount of testosterone in my system and absent periods. I was just wondering if you had any if these problems? I have not been back to the doctor, because it scares me. But I am determined to get all this figured out and under control. Thanks

[smt232724]

hi im 14 and i was jsut diagnosed with this and i dont know much about it. im still doin research on it but i was blessed to have a minor case of it where its not as severe and i want to thank you for making this video. people should do somethign lke this more often.

[greenemerald152]

i have CAH. Had it since i was born. im a female and 17

[elleireland11]

Hey liz,

Thanks for sharing this I have only been diagnosed with cah and I am 19 years old. I always knew something was not right and I have had a long wait to find this out. I also did not need any surgery. Thankfully.

Thank you for speaking out about it. xxx

[uschelseagirl]

you're very welcome :) Do you have facebook? It would be really brilliant to talk to another girl my age with CAH! :)

[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!

[KawaiiFruit]

Hello Liz,

I'm a medical student in my senior year. and i learn about the diseases by listening to people/patients and how they struggle and cope with it.

So right now i learned more about CAH from the patient-point-of-view. and i'm really grateful for that. so Thank you for being courageous.

Aysha

[osprey999]

My son is just turning 9, and he has the most severe case of CAH. I would love more video input from all with CAH to help us all out. Thanks.

[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.

[shouldbewritingpaper]

Thank you so much for sharing Liz. It takes BRAVERY to openly share your story with the world. As you importantly stated, steroids have many side effects including weight gain, "moon facies," and mood changes. I urge people taking steroids to be aware of their side effects. Of interest, undiagnosed CAH is an often overlooked cause of infertility. One article to look into is "CAH, A Culprit in Infertility, Overlooked Yet Treatable" (NYTimes, google title). thx for opening the discussion!

[LUCKYMOMMYOF2]

THANK YOU!!!!! :]]

[LUCKYMOMMYOF2]

THANK YOU, THANK YOU, THANK YOU!!!! I am so happy that you are sharing your story with us!!! My daughter was diagnosed with CAH at 2 months old.. She is now in her terrible 2's!! I want to learn as much as I can about CAH as I can..I just wish everyone else would too!!!! Take care and Thanks again!!! :]]

[pinkmonkeysrock11101]

Hi. I have CAH to i was digonosed when i was 7. Im now 14.

[rafay79]

Thanks for the video Liz! My 6 month old daughter was diagnosed with CAH so i am looking for all the help i can get

[IamKris411]

Hi there, I have been diagnosed some years ago - with PCOS, and a little over a year ago, I moved to Germany to be with my husband... After visiting the endocrinologist, they wanted to re-prove my diagnosis... They did all kinds of tests to rule out some other things. Now the gynec. wants to get me tested for CAH... I am curious to hear about your symptoms... and is there anything that REALLY stands out that one might have this? nobody EVER brought it up to me before now... Ive got classic PCOS

[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!

[TheCesy80]

hi liz,

would you like to add me to ur facebook?am 29 and been diagnosed with CAH but a mild one..am taking dex for 5 months and get lots of changes..breast growing,clit getting shorter n smaller,regular menstruation,etc..hope can get more experience stories about it

[waliddeeb1]

Hi Liz

thanks for your post. I'm a doctor in the uk currently preparing for a registrar post. CAH comes up in our exams, un4tunately I haven't seen a patient and talked to them about CAH. thank you for sharing your experience with the world.

[kennedym90]

im 21 and was diagnosed when i was 4 great to hear im not alone

[wellzy66]

im 19 years old and i have CAH i know exacterly how you feel. and what you have gone though growing up .

[mmskittles2]

Thanks for your video. My husband and I have two girls with SW-CAH. Our 5 yr old is going to K in the fall and I need to know how to deal with bullies, telling friends., peer pressure as a tween even though we are not there yet. What was school like for you? What does a 5 yr old tell her friends when they ask about her condition? She already knows about her adrenal gland in her terms.

Help me to understand as a parent what she is going to be going thru as she gets older. Thanks

[uschelseagirl]

hi everyone! I will plan on sharing my stories about dex soon, and I will also have my fiance on a "special guest" talking about his perspective on taking care of someone with CAH :)

Keep watching, God bless, and thanks for all the comments and support!! :) Keep it coming!! :D

[thesunnysea]

Thank you as well for sharing this. I have a 14 months daughter with swcah. If I may as also what problems did you have on dex? bless your heart!

[branch114]

Thank you! Please keep them coming. If it's not to personal - what happened when you were on dex?

I have a son who is 15 years old with CAH.

Warm, healthy wishes,

Diane

[Courtneyandscarlett]

Hi Liz..this video was wonderful! I have an almost 2 year old who was diagnosed at birth with salt wasting CAH. What type do you have?? I thought this was very informative. The Magic foundation is great..have you tried the CARES foundation also?

[uschelseagirl]

Hi there, I am aware of the CARES foundation and I am actually a member of their "community". They have LOTS of great information and my mother has called them before. I am not so much salt-wasting as I am classical. I used to think I had late-onset because my CAH was not detected at birth (no external signs or dehydration) but my endocrinologist says it's classical.

[bjohnson23601]

Thank you for making this Video . My oldest cousins youngest son has CAH and then my Youngest son who is Three has SWCAH. Yes we have found it is in the genes. My Sis is pregnant now and she is a carrier but her husband is not.

We have been to the Magic Foundation Convention one year but we are waiting for our son to get older so he can go with us .

We have since found friends that have children that have this Disorder and I want to help you too!!

[artsmarts1]

Thank you for your video. I have had CAH since birth. I am now 54 years old and a Grandpa.  I had shots for the first 5 years of my life and have taken pills since then. I have led a very normal life, played all the sports, had broken bones, stitches

and everything else that any other accident prone kid gets into. Just remember to take your medication and when there is illness or stress contact your Doctor. If you have any questions please contact me.

[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!

[uschelseagirl]

Thank you so much! :D

I am already planning my next video which is about trauma and crisis with CAH and how to deal with that. Stay tuned and please spread the word!

I am so blessed to know this has helped you. <3

[markflaaless]

Thanks for your video. Our family is in the learning process about CAH since our son was diagnosed a few weeks after he was born 9 months ago. Thanks for sharing your story!

[uschelseagirl]

Thank you! :)

aww I bet he's a cutie!! Glad that this video has been helpful to you. Keep watching, there's more to come!

[swcahmother]

Thank you!!!

[uschelseagirl]

you are very welcome!!! :)

[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!