My illness is EDS and I need your help!
My dear friends, family and co-workers I am asking for your help. it is very hard for me to ask for help. However, I have no choice. I have been diagnosed with a progressive disease called Elher's-Danlos syndrome. I want to help my friends understand what I have been through over the last few years, but I want to keep this message short and to the point. In the past few years I have had multiple severe life threatening conditions. Most of the illnesses came from EDS and a few other underlying health concerns. EDS is a connective tissue disorder. Your body does not make enough collagen to support you. The lowest level is hypermobility. This can cause severe dislocations and continuous pain. Having numerous dislocations will lead to long term medical concerns, that could lead to more serious conditions in an EDS patients life. the highest level of EDS affects a person's veins, arteries, bones and organs. When the lining of an artery or organ is thin it will rapture. Level six is the highest type of EDS. This disease is rear and misdiagnosed often. It took more than 10 years for doctors to diagnose me correctly. I had signs of this syndrome from my childhood, however as an adult my symptoms worsened. In the last 10 years I have had the following: full or partial dislocations on many joints (hip, shoulders, fingers, and thumb), my knee cap sliding out of place, and have sprained my joints multiple times. I have dealt with amassive blood clot in both my lungs and one in my arms. I frequently suffered from migraines which lead to brain surgery for a tumor. Four years after(now 2014) a second and third brain surgery is needed for severe aneurysms, on each side of the brain. There are many more things I could list but, I am sure by now you understand EDS and maybe how I feel. Because of being ill, I have been out of work off and on. I lost my health insurance for a year. Now I am on short term disability. 80/20 insurance does not cover enough when one head cat-scan is over $3000 and my brain surgery was well over $20,000. My medications with insurance cost me $500 a month and the multiple co-payment to see a doctor is $35. when the EDS is bad, I can see the doctors up to three times a week. On a regular bases I see at least one doctor a week and don't forget the gas and parking that goes along with visiting specialist at the hospital. Friends after all that information I am sure you understand why I am asking for your help. My doctor bills have grown to over 40k and still growing. I need your help and god's help. I pray every day thanking God for what I have in my life that is good. The good things in my life are my friends and family members. The best thing in my life is God and Him giving me the strength to ask for help. Any donations will help. Let me thank all of you, for your thoughts prayers and any size donations.
Love you all,
Colleen
