Arthritis-Related Enthesitis is inflammation of the site at which the tendon or ligament attaches to the bone due to arthritis.
Chemio with Rituximab worked for me
Six months ago my daughter (then 16) was hospitalized with a massive blood clot extending from her stomach to the ankle of her left leg. At the same time she developed a sudden allergy to NSAIDS. After many doctors and many tests, she was diagnosed with Spondyloarthritis, specifically enteropathic arthritis with associated inflammatory bowel disease (IBD). As she matures, the IBD could become Crohn’s or ulcerative colitis. Currently the arthritis inflammation is mostly in her spine, chest and ribs while the IBD is localized to her small intestines (only cramps and pain). She also suffers from vein damage in her left leg and tendentious in her right leg (a symptom). To add to the lovely list of ailments, most recently she was also diagnosed with Fibromyalgia. All of this is pretty overwhelming and seems very unbelievable. She sees four different specialists with four different drug treatments. Her drug treatment for the arthritis seems to finally be working (injection Methotrexate) and controlled exercise is helping with the Fibromyalgia. However she is still greatly suffering from the IBD. Her current treatment is 3X daily Belladonna phenobarb. Doesn’t seem to work. She also has developed allergies to nuts and dairy (which she never had until now). I am interested in learning what similar stories other have and what they found has worked them. It feels like the doctors just guess at treatment and we are trying one thing after another only to get limited results. I need my daughter to get her life back by controlling this rather than it controlling her. Any suggestions for alternative medicine is also appreciated.
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.
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