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If you’re curious, check out this ar2cle I found. It does a be8er job then I could at explaining why I’ve been sick so long. I have a gene2cally inherited disease called Ehlers-‐Danlos Syndrome [EDS]. I was a long & frustra2ng 8 years being misdiagnosed again & again. In 2006 an EDS expert at U of M made the deﬁni2ve diagnosis aNer two Beaumont docs started puPng the puzzle pieces together. ANer examining my family history, (Provost/Buckley side), it was clear that my Mom, Grandma, my Aunt Helen & cousin Greg had EDS of varying types & severity. EDS explains my joint pain, falls, insomnia, fa2gue,a stroke & several miscarriages. These symptoms started when I was just a kid & became disabling & chronic in my 30’s. There is no treatment or cure for EDS so, at best, doctors can oﬀer help managing chronic pain & fa2gue. I’ve tried every combina2on of medica2on you can imagine and aNer 10 years, the toxic side eﬀects became worse then the disease itself. Everything changed when I found a pain doc who transi2oned me oﬀ the serious meds slowly & safely. It was like I came out of a coma & the nightmare became tolerable. It’s been 2 years & I improve more every day. There is no way to predict the road ahead because nothing can slow or stop the progression of this disease. I plan on making up for lost 2me & enjoy this remission of sorts for as long as it lasts. Pat & I celebrated our 25th anniversary this summer by taking an Alaska cruise & we went dogsledding on a glacier. That qualiﬁes as a miracle in my book. I’m much be8er but my jaw con2nues to deteriorate & I had yet another, cranial/maxillofacial surgery in September. The goal is to correct my bite with bone graNs in my sinus & implants to help me talk, chew & swallow much be8er. My brother told me recently he’s never sure what to say when people ask him how I’m doings. He does just ﬁne & keeps it simple by saying, “she has her good days & bad days.” I’ll let the EDS Na2onal Founda2on explain it in detail. ;D EDNF [Elhers-‐Danlos Na0onal Founda0on] What is Ehlers-‐Danlos syndrome? The Ehlers-‐Danlos syndromes are inherited in the genes that are passed from parents to oﬀspring. More than 1.5 million people around the world have Ehlers-‐Danlos syndrome (EDS). Someone with EDS is born at least every half hour, and many won’t know what’s wrong with them un2l its too late for them to be helped. EDS is largely unknown. Recent evidence indicates it may be one of the most under-‐diagnosed disorders, because there is no cure and many doctors consider EDS too rare for anyone to have. Ehlers-‐Danlos syndrome is a group of disorders. Each type of EDS is deﬁned as a dis2nct gene2c problem in making or using one of the types of collagen. Collagen (like glue) is used by the body to provide strength and elas2city to 2ssue; normal collagen is a strong protein that allows 2ssue to be stretched, but not past its limit, and then is safely returned to normal. With badly built or processed collagen, some of the soN 2ssue can be pulled further than is safe, causing damage. Collagen is the bodys most abundant protein and can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on. EDS has a very wide range of symptoms because of how widespread in the body collagen is. EDS causes joint hypermobility (loose or unstable joints that slip or dislocate); early osteoarthri2s; 2ssue fragility, skin that tears and bruises easily, blood vessels and internal organs such as intes2nes that can rupture easily; eye problems and gum disease. Some symptoms can be seen, but not all; EDS is largely invisible. Pain, for instance, can be widespread—collagen makes up the fascia, the 2ssue sheet that holds everything together and wraps around your en2re body—but the pain will not show up in MRIs or X-‐rays. There is no cure for EDS but many symptoms can be addressed as they arise. Free informa2on and resources from Ehlers-‐Danlos Na2onal Founda2on can be found at www.ednf.org or reaching the founda2on on Facebook. [Wri8en by Mark C. Mar2no]