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Eosinophilic Fasciitis: Looking to connect with others

Autoimmune Diseases | Last Active: Aug 8, 2023 | Replies (34)
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@donnai12345

Hi Stephg, I have an appointment with the rheumatologist in a few weeks. I am sure I have Eosinophilic fasciiitis. I also have Lyme and have read a few journal articles about Lyme fasciitis. What are you doing for treatment? Such a rare disease that it is hard to find anyone to communicate with about it. I have the deep groove in my forearm and venous furrowing. I believe doing a lot of yoga tirggered the symptoms.. I am in Canada.

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Replies to "Hi Stephg, I have an appointment with the rheumatologist in a few weeks. I am sure..."
John, Volunteer Mentor | @johnbishop | Aug 10, 2020

Hello @donnai12345, Welcome to Connect. I'm sure it is really difficult when you have such a rare disorder and not much is known about it. Learning as much as you can about Eosinophilic fasciiitis will help you communicate better with the rheumatologist or doctor. You may have already seen the National Organization for Rare Disorders website page for Eosinophilic fasciiitis but I thought I would share it here in case you haven't seen it: https://rarediseases.org/rare-diseases/eosinophilic-fasciitis/

Can you let us know how your upcoming appointment with your rheumatologist goes?

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