Congenital Adrenal Hyperplasia is a genetic defect of the adrenal glands.
Our 6 day old son has been diagnosed with CAH. I was just wondering if there is anyone out there that can tell
me what life is like with this condition and does it affect you in anyway that stops you from doing anything. Any information from a personal perspective would be much appreciated.
Hi, my name is Jay Desai and I am currently a research assistant at the National Institutes of Health Clinical Center. My lab focuses primarily on studying Congenital Adrenal Hyperplasia (CAH), an autosomal recessive disorder affecting the adrenal steroidogenesis pathway. As a research assistant, I have had the opportunity to meet with patients during clinic visits (currently telehealth) and observe the clinical features associated with the disease. One of these clinical features being the hormone effects associated with excess androgen production.
These hormone effects include acne, weight gain, and hirsutism. While these effects may be prevalent in all those who have the disorder, I am interested in learning how these effects may uniquely impact South Asian women. As a South Asian male, I am aware of the many stringent beauty standards that women in my society face. Furthermore, I recognize the negative consequences that misinformation may construe - especially about sensitive subject material such as excess androgen symptoms in women. As a result, my best friend, Jahnavi Kola, and I are aiming to create a website to share stories from South Asian women affected by CAH and other excess androgen disorders. Ultimately, we hope to shed light on these issues in efforts to not only empower South Asian women affected by this disease but anyone facing pressure to conform to mainstream norms. Are there any of you who would be willing to set up a call to talk about your experiences? If you do not have a South Asian background, we would still love to hear about your experience. Everything you say will be confidential if you so prefer and will not be published without your consent. If interested, please reach out to me at email@example.com or Jahnavi Kola at firstname.lastname@example.org. Thank you.
hi Adeerni, What country are you in? "Hisone" or "Hysone" is a brand name used in India for hydrocortisone sulfate, or simply "hydrocortisone and it should be available everywhere.
Hi there, iam the mother of CAH child. Right now i have accepted about my child disorder. My son get simple virilisation type. But now i am confused about the drug (hysone), because that drug not available in my country, really difficult to get that drug. Please help me and our group (the name is kahaki) to get that drug.
Thanks HopeSuzanne for your upbeat contribution! Even though I have classical CAH, these days I feel that it is the least of my worries as I have so much other health stuff going on. Whether CAH has contributed to these other diagnoses I don't know, but I think I am stuck with them for the long haul! Oh well! I do try and keep positive though with a smile on my face, which can fool most of the people most of the time!! Have a great day everyone! Syz
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This means that every cell in my body carries two mutations for this defect. Sometimes this feels quite surreal....
My main complaint is fatigue
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