Justin's Ehlers-Danlos Syndrome Health Fund

For those of you that may not know me, my name is Justin Schmidt, I am 39 years old, and earlier this year I was diagnosed with a rare genetic disorder called Ehlers-Danlos Syndrome. I am an American, my wife Sabrina is German, and we live together in Germany with our three beautiful daughters (our youngest is just a couple of months old). I met my wife while stationed here in the Army and I loved it so much that we decided to stay after I was medically separated from the service. After I got back from my first deployment my health started to decline. I started experiencing digestive issues and my ankles, knees, hip, and back were failing quickly. Outside of separating my shoulder during high school wrestling I've never broken any bones growing up. After six years of active duty and none of the doctors able to explain why... I just fell apart. In peak physical fitness and the middle of my 20s I simply just broke. Their best guess at the time was hypermobility syndrome. Since then my health has progressively worsened and in the last two years, it has become life-threatening. My digestive issues went from something minor that bothered me as chronic heartburn to something undiagnosed causing over 60 pounds of uncontrollable weight loss, major digestive issues, and stabbing pains after every meal. Sometimes a pain so unbearable that I would pass out. But how is that related to my joints???

(This is what I usually look like. Roughly the last time I was at my normal weight)

     Around the spring of 2017, I went in for the results of my yearly physical. The doctor looked over all the blood work and said I was healthy. Except I really wasn't. At that time I had lost 30-35 pounds without any reason as to why. And so began the gauntlet of specialists and tests for the next two years straight. By the summer of 2018, I went home to the US and everyone able to see how unwell I was. Some friends and family I haven't seen in over a decade were genuinely concerned. People would make sure I was eating and but see that I was reacting in severe pain 15-30 minutes after every meal. I had hoped that maybe I was just ill from stress and that maybe relaxing back home would help, but I got worse over the trip and went home to Germany with more questions than answers. It wasn't all for naught because social media end up saving my life! Over Christmas break, 2018 an uncle from Texas and a friend from Ohio both tagged me in a post online because I looked like he did. This post to be exact. He is another military veteran that had MALS and was trying to get approval for his life-saving surgery from the Veterans Administration. At this point, I had already been in the hospital twice,  all my doctors and specialists were still coming up empty, and they were running low on ideas and tests to run. They had even got to the point of telling my wife I was perfectly healthy and she needed to check me into a psychological center. So, over the holidays I did as much research I could get my hands on whatever this MALS was and what causes it. Median Arcuate Ligament Syndrome (MALS) is a condition in which the median arcuate ligament (the diaphragm) presses too tightly on the celiac artery (the first major branch of the aorta that delivers blood to the stomach, liver, and other important organs for digestion) and the nerves in the area (celiac plexus). This sounded exactly like the stabbing pains I was getting after every meal.

     
     I continued to do my research and eventually, I tracked down a woman in the UK that had a lot of the same issues I was having. Except her story wasn't just about MALS but also about something I hadn't heard of yet hypermobile Ehlers-Danlos Syndrome (hEDS ). This disorder causes collagen production to be faulty leading our bodies to be extremely flexible/stretchy in our skin, ligaments, tendons, blood vessels, internal organs, and bones. Mostly my EDS has chosen a majority of my joints, digestive system, and arteries/veins.

     
     Up until then none of the possible diagnoses had fit. They would be an 80% match at best. MALS and hypermobile EDS, however, explained everything and then a whole lot more I hadn't even considered! The woman I tracked down online is someone I now consider a life long friend and one of my guardian angels. Without her intervention, quite simply, I would not be alive today, and I will always be thankful to her! Here is my friend Emma Green's story. Through our correspondence, I was lucky to find out that two of the World's best doctors in this field are here in Germany. Professor Scholbach in Leipzig specializes in detecting vascular compressions with 3d color duplex ultrasounds. I scheduled an immediate appointment with Professor Scholbach whose test confirmed in Jan 2019 that I have four vascular compressions of my arteries/veins, that this is caused by hEDS, and that I needed immediate vascular surgery for MALS. Professor Sandmann at EVK Mettaman was the other World's best and I had open chest surgery in May with his team to repair the MALS compression. This has left 3 vascular compressions left still in my body. These are May-Thurner syndrome, Nutcracker syndrome, and Inferior vena cava syndrome. My surgeon decided to leave the other three because the risk vs reward was too high. His hope was that repairing the MALS would allow my blood to flow properly in the lower abdomen. Since May I've been to a post-op vascular rehabilitation facility, filed for my handicapped rating and benefits, and have been continuing to do tests as I am still having major digestive issues and severe pain. Stuck in limbo fighting an unwinnable war with the insurance company. I really don't know what to do anymore.


     I am trying to raise money for several medical procedures that my medical insurance has denied multiple times and absolutely refuses to cover. I am not proud to ask, but after being told no for so long, what else can I do? Crowdsourcing seems to be my only option. My insurance company didn't even pay for Professor Scholbach's procedure the first time, and it was the only test that showed definitively what was wrong with me, and that I needed major surgery. Because I have been so ill, plus having open chest surgery in May, I have been unable to work since January of this year. For transparency reasons, and I also feel an obligation to note, I am on long term medical benefits through my insurance company until I can get healthy enough to get back to work. These benefits allow me just barely enough to support my family, but it doesn't afford me the ability/comfort to afford these procedures I need. Also, these long-term benefits are finite and are quickly running out.

TL:DR
I am trying to raise money for an EDS/vascular compressions medical fund.
More specifically funds for...

1. Upright MRI of my entire spine and neck (to see if I need any spinal surgeries, I suspect I need at least two)
2. Electron microscope biopsy for EDS at the University of Heidelberg.
3. Wireless capsule endoscopy to make sure we haven't missed anything gastro related before refocusing on vascular compressions again.
4. 3d color duplex sonogram scans again by Professor Scholbach in Leipzig (to see if I need any more vascular surgeries, probably do).
5. Possibly to see an EDS specialist in Belgium (can't seem to find any in all of Germany).
6. DAV (Disabled American Veterans) lifetime membership to help me get my VA disability claim filed and service-connected.

DISCLAIMER: If for some reason I would not be able to have one of these specific procedures above, the money will stay in the fund,  will be repurposed, and if needed to be withdrawn for medical use only. I wish to be as transparent as possible since this is charity and your generosity.

 
     I want to be around long enough to watch all three of my daughters grow up and I want to get back to work. Y'all might be able to help me achieve this goal. I believe that these procedures and tests will help me get a solid handle on the next steps in my journey towards better health. Any assistance would be a godsend! Thank you for all the love and support it's greatly appreciated!!! Every day I am here I count as a blessing. 

Please feel free to share my campaign far and wide. I could really use all the help I can get.


Thank you very much,

-Justin and the Schmidt family



NOTE: WE HAVE HAD REPORTS OF FRIENDS AND FAMILY HAVING ISSUES DONATING BECAUSE OF THE GOFUNDME PAYMENT OPTIONS. WE HAVE ADDED TWO PAYPAL ACCOUNTS. 1 FOR PEOPLE IN THE EU AND THE 2ND ONE FOR PEOPLE IN THE USA. WE HAVE ALSO ADDED OUR IBAN ROUTING NUMBER FOR PEOPLE IN GERMANY, AS SOME PEOPLE HAVE WANTED TO DONATE OUTSIDE OF THE GOFUNDME CAMPAIGN. 

Donations in US Dollars via Paypal USA can be made here: https://paypal.me/pools/c/8jyGKzMJQT 

Donations in Euro via Paypal Germany can be made here: https://paypal.me/pools/c/8jyAVAyROj 

Direct donations to our bank can be made in Germany via:
Bank: Sparkasse Vorderpfalz
IBAN DE74 5455 0010 0000 9450 06