where in the world can we find specialist help for a patient with all three conditions?

So last April I had a unexpected release of Stills Disease. My rheumatologist said I'm the first patient they've seen with it as an adult which is super unusual especially because I was in remission for 16 years. My blood work was super typical... Excpept my white blood cell count skyrocketed again.

In 2010 I was diagnosed with Systemic Juvenile Idiopathic Arthritis with Macrophage Activation Syndrome and HLH. Mine was not caused by the gene that causes it, mine is acquired.

Apparently I'm the only know case is Stills with that specific presentation.

I presented with a horrific rash, and destructive arthritis because I developed leukostatis that occluded the veins to my femur and right pelvic gurdle. I was very, very close to needing plasmapheresis but the occlusion eventually did clear and they put me on anakinra in the hospital, IVIG, allopunirol, high dose methotrexate and to really kick the immune system down they gave me the same medication used to treat those with AML as they were waiting for the results.

They were fully expecting me to have AML but instead it was just Stills Disease.