Lipodermatosclerosis is a rare skin disorder characterized by smooth, brown, tight and painful skin just above the ankle resulting in chronic venous insufficiency.
I just wanted to let you all know that a wonderfull Johns Hopkins doctor at the Wound Center put me on Lovenox injections twice a day for several months. Then I tapered off slowly to once daily for a month, then every other day for a month. It worked great! Once the swelling and inflammation went down I was able to come off the Codeine and Lyrica for pain!! The theory why this works is that it is a very powerful anti-inflammatory medication and it also thins the blood to get thru the damaged veins. I also used strong commpression Kneehigh socks of 30-40mmHg at all times other than sleeping. I am off all pain medcations and only use the socks daily. So far so good and the doctor said I may need to repeat the Lovenox if I get into another flair. This has been a 17 year long disease that regular and even specialist doctors do not know much about. This treatment saved my leg, and my quality of life.
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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