Family struck by illness

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Family struck by illness

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Hi world. My name is Sarah Blom.  I'm 31 years old,  and I have Ehlers-Danlos hyper mobility syndrome with vascular crossover traits, which brings along basically a genetic nightmare! Ehlers- Danlos Syndrome is a connective tissue disorder that affects the way my body makes collagen. Since pretty much everything in our bodies but maybe bone have collagen you can see where that might be a problem. It's like putting a really nice body kit on a lemon built with faulty parts. Because of that defect it brings on a lot of what they cal co morbidities. I call them a genetic nightmare! Bc of my EDS I have developed POTS, dystonia chronic fatigue, migraines, an enlarged heart, cranial cervical instability, and fibromyalgia. Just to name a few. 
It wasn't always like this. For the most part I thought I was fairly normal. I noticed i wasn't quite like everyone else I knew but I was ok with that. Sure I was clutsy, and super flexible, and everyone would always comment on how soft my hands were. I did think it was strange when I went to get fingerprinted for a state license the machine couldn't read my prints, I basically have lil to no fingerprints. Strange but ok, and sure my wrists and shoulders would dislocate evertime I wanted to do the helicopter as a kid.  I was born bilateral clubbed feet and had to wear a brace. I had a surgery on each knee before the age of 20. The growing pains never really stopped. I would get these horrible headaches. But I always brushed it off and kept going. I was always extremely active. Tomboy from a young age. Played sports with my cousin and his friends, grew up walking beans and roguing/detassling corn. I was a boxer and even a dancer. And then at 25 the pain started to get harder to ignore. I got a flu shot and couldn't walk for 2 days bc every joint was red and swollen. I felt like my body was turning against me. Then one day I got a migraine that refused to go away. 3 weeks I waited until my best friend basically kidnapped me and took me to the er. Then it happened I heard the say I know why all of this is happening to you. I was in shock I was excited hoping that now that we know we can fix it and I can get back to my life.... that was very very short lived. Ehlers danlos has no cure. I didn't know what was worse not knowing or knowing and being totally helpless. And so my journey with eds began. It's been 5 years now, and it's a constant battle. And most of the time I know more than my Drs do about it. 
I have a wonderful husband that works himself to the bone to try to provide for our family. Especially since I have not been able to work the last 2 years. I also have an amazing 10 year old son that just impresses me more and more everyday. 
unfortunately this disease comes with a lot of bills, copay, expensive medicines, equipment for my mobility and stability not to mention the procedures and surgeries. 
Its just too much for our poor family to handle on 1 income and it could take up to another year to get my disability approved. 
Our savings are depleted, bills are stacked to the ceiling,  we were already down to 1 car, and now the others transmission blew. School clothes and supplies are coming up. My braces for my joints have come in but I can't pick them up till I pay the leftover. To put it bluntly I'm freaking out!! This is really my last hope to try to get our family above water until my disability comes through. I would greatly appreciate any help you could give. It would not go to waste! It would go to helping a desperate mother and wife have a better quality of life.

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Sarah Blom
Organizer
Overland Park, KS
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