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Shawn's battle with Elher's Danlos

Organized by: Shawn Henning

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My name is Shawn, I have had a life long battle with a condition called Ehler's Danlos Syndrome (learn more about it here In the beginning I had no clue what was wrong with me, I only knew that I was always getting hurt, was in pain, and had a lot of trouble sleeping. As I got older my problems got worse and worse. For years no one knew what was wrong with me, some were not even sure there was something wrong (Doctors, friends, employers, even family). I had no answers and no hope. I have had bouts with extreme depression through the years as I have felt like I was fighting an uphill battle all alone. Then as an adult I was finally able to see some doctors (My family was anti health care due to financial issues). After seeing a Rheumatologist at age 22 I was told that I might have Elher's Danlos Syndrome, an incurable and often a debilitating condition. This doctor sent me to a Geneticist that confirmed my diagnosis finally giving me answers and lifting some weight off of my shoulders. The relief has been rather bitter sweet as I found that I will never be "normal". I have always been into sports (Football, Basketball, Running, Baseball, etc.) I was told I would have to give all of these up as I am prone to dislocation and subluxation of joints, when I get cut or hurt myself it takes me much longer to heal as well. I currently need surgery on my ankle, both knees, my hip, both of my shoulders, and my wrist. I live in pain every second of everyday, I dislocate joints in my sleep (the very few times I can actually get to sleep with the constant insomnia from my pain) the worst part of all of this. No one can see it, I look like your average guy if you were to ever see me and people think that I am just lazy, and that there is no way I could be in so much pain. I have very little support in my life and feel really alone. The only people that have came close to understanding what I am going through are my doctors and I don't know where I would be with out the help and support they give me. This condition has taken away many aspects of my life and made many things I love no longer attainable. I no longer work as there are few jobs that I can do within my abilities. I want nothing more then to work and make a life for myself, and build a family but I cannot keep a job because no boss understands my excessive amount of sick days/doctors visits/tardiness (since I have so many problems with sleep) as well as my productivity is many times very low since I have tremendous pain if I do any one thing for too long of a period. This has emasculated me in ways beyond explanation. I cant really even take care of myself.... I never pictured my life this way. I have not yet been approved for disability and honestly I am not really interested in being on disability. I want to make my own way and my own life. The main problem is I come from nothing, I have no savings due to a shaky job history and doctors bills. I am up to my ears in debt from the same things. My only hope to provide a life for myself and build a family is to start my own business. As a business owner I would still have to answer to customers and work but there is flexibility in hours and progress on work. I would be able to take more breaks to complete work and not have a boss overhead firing me and not understanding my situation. I am very well versed on computers and have always been fascinated by them. I always want to be around and work with new technology, there for I want to start an IT repair, and consulting business. If you find it in you to donate to my cause I would have a once in a lifetime opportunity that has never been afforded to many people, and I will have the chance to get the most I can out of this life. This is where you come in, I need your help to start this business and to help pay some of my medical bills. Honestly the amount of money I am asking for is not even enough to pay my medical bills thus far, not even thinking of the surgeries ahead of me. The funds I am asking for however are enough to get my business started and help pay some of the more pressing medical bills until there is income from my business to start taking care of all of them. I really hope you can see some of what I have been through in my life and see that I really want to make the best of what has been handed to me, and I know with your help I can. Thank you for taking your time to read about my life, and to help me with my battle.

Shawn Henning

If you would like to know more or have any encouraging words please feel free to email me at


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Shawn Henning

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