Sending Out An SOS...To The World

Dear friends, friends of friends, and future friends: Over the last 21 years I've had about as many surgeries. One stops counting after a while in the hopes they'll become less frequent and--dare to dream!--STOP. They haven't. [But I'm totally keeping the dream alive!] I'm actually drafting this letter in a hospital bed, freshly medically upgraded; this newest procedure the catalyst for my request for help as I (very) recently came to the realization that I work only to pay my medical bills, just managing to get by from surgery to surgery. I had never stopped to think about it in such finite terms because it's my life, my normal, and we all have our own normal. But my last 4 surgeries--including this brand spanking new one--came backtobacktobacktoback leaving me no time to catch up (physically/mentally/financially/every which way). And now I find myself falling behind after working so hard not to--with more post-op bills heading my way even as I type this. Backstory: I have a rare musculoskeletal disorder, XLH: X-linked hypophosphatemia. One in 20,000 has the condition and cases can be either genetic or sporadic. I'm the latter, so one of the rarest of the rare, if you will. The big symptoms include lower limb deformities (multiple checks), waddling gait--like my spirit animal, the majestic penguin (check), short stature (check), bone/muscle pain and weakness (check, check and check). Those are the majors. The list of minors runs deep and I'd run out of space trying to share... Current story: $4682.50 = the out of pocket deposit that was required for the surgery I'm in the hospital for [as of 9/15/18]. I had to make a larger deposit for the surgery I had last August and I took out a loan to do so --still outstanding-- hoping my insurance would cover enough of the procedure to warrant a refund of ANY amount to me. [Spoiler: it didn't.] Next came the bills for the anesthesiologist and also the balance due to the hospital following insurance payments for my weeklong stay. Then came the required/necessary medical equipment purchases and rentals, 6 months of physio copays, ongoing RX copays, and a year’s worth of follow-up surgical appointments all in all totaling -- drumroll please -- $24,365.42. Bear in mind I've just started the post-op process all over again… For balance, a bit of awesome: It turns out I have one of the XLH-iest cases of XLH and qualified for participation in a clinical trial at Yale that started a few years back. I am one of only 134 adults who helped get the first medication specifically created for XLH approved by the FDA earlier this year! Crysvita is a gamechanger for the next gen of XLHers: they may never experience most of the heinous symptoms people my age and older lived through. [Fingers crossed.] I'm super-proud to have been a small part of this big win. And along with the tons of titanium I'm chock full of, Crysvita is helping to make my bones stronger. So although I'd prefer to never-ever (EVER) have surgery again, there's a definite comfort in knowing I'm in the best shape possible to take on whatever it is when it comes. So, dearest humans of the interwebs, please chip in if you possibly can. You'll be helping to quite literally keep me on my feet! With more appreciation than you can imagine, Perrie Rizzo
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Organizer

Perrie Rizzo 
Organizer
New York, NY
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