Folks considering the relatively recent discovery in the early 1950’s of Churg Strauss Syndrome at Mount Sinai Hospital I propose a new center for Vasculitis care facility since so few exist nearby. It would also honor the great names of the scientists who found this horrific disease because the scientific name of CSS was recently changed by the Vasculitis Foundation to EGPA or eosinophilic granulomatosis with polyangiitis wow what a mouthful that is. Much harder to remember than CSS in my opinion but hey that’s the scientific community for you they love to use words the common man will stumble over.
Back to the point of this article which is to advocate for a treatment center for rare vasculitis cases and for research to be done at Mount Sinai, perhaps this would even persuade Dr Harry Spiera’s son Robert, also a well-known rheumatologist, to come head the center or research decision himself. Given that he coauthored the paper on rituxan and CSS I think he’s certainly a viable candidate and I know Mount Sinai NYC would love to have him there.
With so many donations coming in to this huge and rapidly expanding hospital with amazing tools like myChart that us vasculitis patients desperately need to keep EMR’s or electronic medical records as well as contact our doctors more frequently with updates on our condition. I sure do hope Mount Sinai will consider this move as a center for vasculitis research and care would extend their care capabilities an invaluable amount bringing in many more long term patients who will be lifelong customers. I myself would love to help coordinate all of this and would be willing to lobby for Mount Sinai to get extra funding for this in DC if need be. I just need to get in contact with the appropriate senatorial committees
Anyways I plan to write article for all the big New York papers on how many lives this would potentially save and it would mean more patients would be able to stay at home living here in NY paying state taxes here throughout treatment. It certainly would generate revenue for the hospital and provide a safe haven for us autoimmune patients especially if they included a long term care unit for the rarest most complicated cases of vasculitis. That way as soon as a clinical trial the patient qualifies for is ready he/she might already be settled in and ready for the treatment.
What do you think of my idea folks? With all the money spent on cancer research and facilities I think it’s time we turn our attention to vasculitis. Especially rare forms that we have no information about like EGPA which we know neither the cause or cure for only a guide of 6 general symptoms to be diagnosed. This center could change all of that and bring vasculitis care in the State of New York to a whole new level.