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Medical Expenses For EDS + Awareness

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Hello everyone in the internets! I am Sid! I suffer from a rare disease called Ehlers-Danlos Syndrome. To explain this, here is an excerpt from wikipedia's page on the subject: EDS is an inherited connective tissue disorder with presentations that have been classified into several primary types. EDS can have neuromuscular complications including eye complications. Many people with EDS have difficulties as a result of frustration with the medical system and the socially inconvenient combination of appearing normal while being in severe pain. Because people can appear healthy despite EDS, it is considered an invisible disability.But EDS is, sadly much more than that. I suffer from two types. Types 3 and 4. Type 3, which is often called the hypermobility type, affects 1 in 10,000 to 15,000 and is caused by an autosomal dominant or autosomal recessive mechanism. Mutations in either of two separate genes (which are also involved in Vascular EDS and Tenascin-X deficiency EDS, respectively) may lead to this variant. Joint hypermobility is the hallmark of this type, with less severe skin manifestations. Joint instability and chronic musculoskeletal pain are particularly prominent in this type. Patients with the Hypermobility Type experience frequent joint dislocations and subluxations (partial/incomplete dislocations), with or without trauma. As a result of dislocations and subluxations, pain is a common, severe, and a lifelong symptom of this type. Additionally, osteoarthritis is common, and many get it much earlier in life than expected. Hypermobility type has also been associated with heart conduction abnormalities.While type 4 is an autosomal dominant defect in the type-III collagen synthesis; now thought to affect approximately 1 in 50,000 to 1 in 200,000. Most are only diagnosed after rupturing, so it is believed that many more may well go undiagnosed. The vascular type is considered one of the more serious forms of Ehlers–Danlos syndrome because blood vessels and organs are fragile and prone to tearing (rupture). Many patients with EDS type 4 express a characteristic facial appearance (large eyes, small chin, sunken cheeks, thin nose and lips, lobeless ears), have a small stature with a slim build, and typically have thin, pale, translucent skin (veins can usually be seen on the chest and abdomen) with very easy bruising and propensity to develop ecchymoses (bruising without trauma). Degree of severity depends on the nature of the mutations involved. The current statistics, based largely on those only diagnosed after rupturing, indicate that about one in four people diagnosed with vascular type EDS develop a significant health problem by age 20 and more than 80 percent develop life-threatening complications by age 40. Both my father and grandfather died from complications due to their EDS in their early 50's, and we didn't make the connection until I was diagnosed at 25.There is no known cure for this illness. Only supportive therapy for pain, insomnia, and other problems (I need forearm crutches because my legs just don't work sometimes due to my spinal problems) are offered as a way to make us "comfortable".As one can imagine, being in so much pain and being so easily injured, makes me a liability, so I cannot work, nor find a job. I keep getting denied disability because they say I haven't worked enough (I have), and I do not qualify for need-based disability because my Army Veteran husband "makes too much". Most of our money goes toward my extremely expensive medications (and this is with insurance co-pays) and seeing specialist doctors. We are left with little to no money every payday because it's the only day we can get all my meds, and sometimes, there are some meds I have to go without until the next payday.We barely float by, and if we didn't have help from our families, we'd have nowhere to live... Most of my medical bills come out to $400-$450 a month these days, and this is with skipping some medications because I simply can't afford to use them due to the rise in our copays. Some months we can't even afford to buy food...If you can find it in your heart to help and send a few dollars, even pocket change, I'd be incredibly thankful. I have tried a fundraiser before, but to no avail. My dream is to buy some proper forearm crutches (the ones the medical supply store sold me are horrible and hurt to use), to be able to renew all my medications when needed, and to not be utterly broke by the end of every payday, hoping no bills come up until the next one.I'd also love to find a way to spread awareness of EDS in the world, but that also takes money to do. Currently, there are no programs of any kind who offer financial assistance to people who have EDS, but I would love for awareness to be spread so widely, that we can change this.Thank you all for taking the time to at least read this. I understand so many people have it hard right now, but every cent, nickel, and dime helps.With love,-Sid-

Organizer

Kayla Micheletti Hildebrand
Organizer
Colorado Springs, CO

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