Brown-Sequard Syndrome is a rare disorder characterized by a loss of motor function and sensation caused by the lateral hemisection of the spinal cord.
I am a female diagnosed with Brown-Sequard Syndrome.This happened after surgery for a badly herniated c5/c6 disc. After the surgery which involved Discectmy,Fusion and PlatingI found I had no use of my Left hand and could not stand properly or take any weight on my left leg.After a week I was sent to a rehab Unit and with intensive therapy was able to get some movement in my fingers and walk with the aid of a walking frame. After discharge I attended Outpatients Rehab for another two months. I had not yet realised the other symptoms as yet until I walked on the cold tiles on morning without my slippers then I noticed that my left foot felt the cold but the right was normal body heat. I tested this again in the shower as I had not thought too much about it til then and found my leg going red under the hot water but it only felt warm. I also at this stage bumped my leg and felt no pain thought that was strange so deliberately hit myself again no pain, I talked to them at Rehab and they sent me straight in to my specialist and he explained the new diagnosis. I had often wondered why I had not felt any pain on my Right hip where they had taken the Bone Graft from as I had been told this would be the most painful site. There has been some down time mostly due to frustration at not being able to do all the things I could before. If theres others with this complaint let me know.
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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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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