Hello!
Looking to connect to people with Familial Mediterranean Fever. I’ve had quite a long journey to getting diagnosed a few months ago (~20 years of fighting for any referral since childhood) and am starting to bubble over with questions about how it might affect me in the long run. I am a medical student so have read a few papers, but they’re rarely a substitute for speaking to actual humans with actual experiences and I’d be keen to know how things have bee for others out there. My GP hadn’t even heard of the condition, and I’m only the fourth patient my rheumatologist has on their list.
I’ve got quite an atypical picture (compound heterozygous rather than autosomal recessive and symptoms mainly joint related and pleuritic pain during attacks). I had gotten to the point of constant, pretty severe pain and was questioning whether a career in medicine would even be feasible, and whether I’d be able to e.g. maintain a pregnancy/raise children in the future. My amyloid is quite raised but hoping that will be under control now I’m on the meds and that I don’t develop kidney problems.
TIA for any links!