Relapsing polychondritis is a rare disorder characterized by the deterioration of the cartilage.
I am interested in communicating with rjones, if possible. I am in northern VA and am in poor health and frustrated with treatment by my physicians. If you are willing to speak via email or just on this forum it would be greatly appreciated. Thank you. Georgette
Hi, I also was also diagnosed last fall, finally, I knew I had it for several years and had to search for the right doctor to properly diagnose me. I'm undergoing treatment with methotrexate and low dose steroids but haven't been having much success. In the beginning the treatment made me feel like a completely new person, my old self, I guess. Lately symptoms are returning and new symptoms have emerged. I am seeing my doctor today, and will post later. Thank you for sharing. Georgette
There can be success in putting this disease in remission with the right meds. It is a trial and error solution not ideal but all we have. There is an extensive forum on Facebook. Just type in Relapsing Polychondritis. I have had RP since 2007 but there are people on the Facebook site that have had it for much longer. I hope this helps.
I have recently been diagnosed with relapsing polychondritis. Has anyone had some success in treating this? I am from the Midwest and was wondering what is available out there.
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.
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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.
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