The Neuropathy Association to Host a “Rare Neuropathies: Getting Diagnosed, Getting Help” Facebook Chat
September 1, 2014
In the U.S., the Rare Disease Act of 2002 defines a rare (or orphan) disease as any disease or condition affecting less than 200,000 people (or about 1 in 1,500).
Of the over 100+ different types of neuropathies impacting millions in the U.S. alone, there are several neuropathies that are considered rare diseases including hereditary neuropathies like Charcot-Marie Tooth (CMT), familial amyloidotic polyneuropathy (FAP) and familial amyloidotic cardiomyopathy (FAC), Lambert-Eaton Myasthenic Syndrome (or LEMS), sarcoidosis, Fabry’s disease, adult polyglucosan body disease (APBD), multifocal motor neuropathy (MMN) and chronic inflammatory demyelinating polyneuropathy (CIDP) among others.
Because these neuropathies are rare (and rarely seen), diagnosis for many can be a difficult and drawn-out experience; many who have been successfully diagnosed have had to be their own patient advocate to achieve that diagnosis. Still, a diagnosis can hold the promise for improved care and the hope of therapies already available and several more in development.
FACEBOOK CHAT: “Rare Neuropathies: Getting Diagnosed, Getting Help”
WHEN: September 17, 2014 (7-8:30 p.m. ET)
– David Epstein (Adult Polyglucosan Body Disease Foundation);
– Allison Moore (Hereditary Neuropathy Foundation);
– other guest hosts to be announced
While diabetic peripheral neuropathy is what primarily comes to mind for many when discussing neuropathy, there are actually over 100+ different types of neuropathies caused by a range of diseases and disorders. And approximately a third of all neuropathies are considered to be “idiopathic” or “of an unknown cause.”
For people with rare neuropathies – many of which can be extremely debilitating – the path to diagnosis can be an arduous journey which may still lead to an “idiopathic” diagnosis without the help of specialists trained to recognize these rarer neuropathies which can have symptoms mimicking other diseases and disorders…or which simply don’t “fit” together. Being your own best advocate for a diagnosis becomes critical. However, diagnosis offers the opportunity for hope as some of these rarer neuropathies now have new treatments either available or on the horizon…if you have a confirmed diagnosis…
Our Facebook Chat will feature a panel of experts who are not only well-versed on the latest tests and best practices to get to diagnosis, but who also are working on bringing new care and treatment options to those with rarer neuropathies. Our panelists will cover:
- Signs and symptoms associated with these rarer neuropathies and the importance of recognizing them early;
- Diagnostic tests available;
- The value of partnering with neurologists specializing in neuromuscular diseases as well as other types of specialists who may be involved confirming a diagnosis;
- Unique co-morbidities associated with some of these neuropathies which may provide diagnostic clues;
- Treatments already available to those with rare neuropathies and treatments in development;
- Current clinical trials and patient assistance programs;
- Ways to improve access to care and quality of life.
P.S.: If you do not use Facebook: You can still access the Chat “live” by visiting The Neuropathy Association’s Facebook page, but you will not be able to join the conversation by posting comments. View the Neuropathy Association’s Facebook page!
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