Congenital Adrenal Hyperplasia is a genetic defect of the adrenal glands.
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
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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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