A family member in Europe was recently diagnosed with ' necrotising, immune mediated anti-signal receptor anti-body positive myopathy'. It is a very rare condition and can leave one feeling very much alone due to its rarity. My family member would like to correspond and compare notes with anyone who is undergoing the same condition in the United States. If you know of anyone who has this condition and would like to correspond with a really great individual, please get in touch.
Thank you in advance.