Angioedema is a rare disorder characterized by rapid swelling of the dermis, subcutaneous tissue, mucosa and submucosal tissues.
How did you all go about getting a diagnosis? My doctors just don't seem interested
I'm HAE III, subtyped as post menopause exacerbated. UGH. It got so much worse after menopause. I now have weekly abdominal attacks, have gone through millions of dollars worth of special medications, ER visits, diagnostics, etc. Am currently using icatibant/Firazyr when the attacks start. It's helping a lot. No more pain meds. Fingers crossed that it keeps working. Also have Kalbitor/Ecallentide as a rescuer med too, but it cannot be self-administered, and so far the Firazyr, a Bradykinin inhibitor seems to be working better. No side effects of being really tired after dosing. Thank God I have a pretty good insurance plan.
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.
My daughter has been diagnosed with Hereditary Angioedema Type 3.
I was diagnosed in 1998 with SCLS. I had been ill for 6 months, and gained 80 lbs. I was given prednisone too prevent an allergic reaction to a test. It worked wonders, and I lost the fluid. I...
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.