Husband has very rare autoimmune disease
Posted: Thu Dec 01, 2016 10:28 pm
Hi,
I'm kind of struggling at the moment caring for my husband. This is partly because his disease is incredibly rare - it's something called IgG4 - an immune mediated inflammatory disease. It can affect any organ, but his is an even rarer case as it affects the tissue in and around his joints. Anyway, while we have a great rheumatology team - it is such a difficult condition to manage and can deteriorate very quickly and so we are at A&E a lot and the GP . I find it so frustrating going over it over and over again with medical professionals who have no idea what it is and the fact there are few treatment options, even in emergency situations.
Does anyone else care for someone with a rare disease?
I'm kind of struggling at the moment caring for my husband. This is partly because his disease is incredibly rare - it's something called IgG4 - an immune mediated inflammatory disease. It can affect any organ, but his is an even rarer case as it affects the tissue in and around his joints. Anyway, while we have a great rheumatology team - it is such a difficult condition to manage and can deteriorate very quickly and so we are at A&E a lot and the GP . I find it so frustrating going over it over and over again with medical professionals who have no idea what it is and the fact there are few treatment options, even in emergency situations.
Does anyone else care for someone with a rare disease?