Isaac's Syndrome is a rare neuromuscular disorder.
|Delayed muscle relaxation||Delayed muscle relaxation|
|Progressive muscle stiffness||Progressive muscle stiffness|
|Continuous muscle twitching||Continuous muscle twitching|
|Increased sweating||Increased sweating, much more increased sweating leads to feeling of weakness|
My Isaacs is with a potassium voltage gated problem in my blood, I did find an article the journal of immunology that studied the effects of medical marijuana on the potassium gate issue. I have never been one to partake in my life, but the study indicates that this is a very beneficial treatment alternative. I have written my state rep and there is a push on with Montell Williams to add this to the list of approved conditions in which it can be legally obtained. At this moment the only legal treatment is severe epilepsy. I hope this helps somebody else. I would be more interested in hemp oil than actually smoking marijuana. From what research i have done it is apparently more effective.
I was just diagnosed a couple months ago, My Dr order IV gamma globulin treatment I am allergic to it, Has anyone found anything that works. I read a report from Immunology Instiute that marijuana does help especially with a potassium voltage gate problem. Has or does anyone tried this?
Hi All, Anyone interested in talking about their experiences with this syndrome? I'm desparately looking for people with the same experiences so that I can give this all a better place... BW, Jasper
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.
My name is Trixie. I am 38 and was recently diagnosed with this rare syndrome. I had symptoms for five years prior to diagnosis.
I will tell you how my life has changed;...
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