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lquillen1963 (@lquillen1963)

Unknown autoimmune/neurological disorder

Autoimmune Diseases | Last Active: Mar 10, 2020 | Replies (14)

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This may seem a little wacky, but my sister, who also has an autoimmune disease sent this article to me today. https://ancavasculitisnews.com/2020/03/03/elsevier-opens-books-articles-to-rare-disease-researchers-starting-rare-disease-day/. Basically, it says “statistics indicate that about 95% of rare disorders, which impact about 300 million globally, have no approved treatment. For many of theses diseases, diagnosis alone, can be challenging. In addition, many patients find it difficult to access information about their disorder and quality of healthcare.” Researchers may have learned about these diseases, but it hasn’t filtered down to your average doctor.

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Replies to "This may seem a little wacky, but my sister, who also has an autoimmune disease sent..."

thanks for link, it should prove to be an interesting read. I am in agreement that we may never know what disorder my wife truly has and it is known there is no cure and sometimes no treatments for neurological disorders. We just want one of these doctors to go out on an limb and try something to make her more comfortable. Her next appt is in April and I plan on being quite forceful and demanding for what we want to happen.
Once again, thanks for the lead.

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