Who am I? My name is Claire Bise, I'm 28 and I live in Glen Rose, Texas. I love animals, books, Coke from a can, family time, and old fashioned cook outs. I have a small life, an amazing dog, a solid family, and I have Ehlers Danlos Syndrome.
What is Ehlers Danlos Syndrome? EDS is a "rare" genetic collagen disorder that affects connective tissue. Connective tissues provide strength and elasticity to the underlying structures in the body, and are found mostly in your skin, joints, and blood vessel walls. So basically anything in my body that is made out of connective tissue is subject to premature degeneration and rupture. The major symptoms are; the spontaneous dislocation of joints, ruptures in soft tissue and organs, severe joint and muscle pain, and various physical deformities. EDS is not terminal, but it is degenerative, and it can be debilitating. Since connective tissue is found in so many different parts of the body, EDS can affect each body part differently, making each "EDSer" vastly different from the next.
How does it affect me? My EDS manefested as gut issues my senior year of high school (07/08) and from then on my body seemed like it took a nose dive towards destruction. By the time I entered my twenties my body had started to completely fall apart. Starting with my shoulders spontaneously dislocating. The right one has done it so many times that I have had 2 major surgeries to repair the damage, and thanks to faulty connective tissue, both surgeries failed. ￼￼So now I have a doner's tibia bone in my shoulder, two large metal screws, a ghastly scar, and an arm that tries to dislocate everytime I move it. ￼￼And it's only a matter of time before the ligaments "naturally loosen up again and get so loose the cadaver bone no longer holds the joint in place" and the dislocations will begin again, according to my surgeon. It's gotten so painful I can no longer write, type, paint, color, or use my right arm in even basic ways without moderate to severe pain or numbness. And it's just a matter of time before it gets worse.
Not long after my shoulder went out, my ribs started dislocating too. I get violent muscle spasms that force the ribs out of place and often push them so far out they can be seen through the skin, making the skin red and tender to the touch.￼￼Just the bottom ones at first but then the instability spread up into my sternum and chest. The only treatment that has worked to help relieve the pain and decrease the amount of dislocations is steroid injections directly into the rib muscles. It's painful, and it's expensive, but it helps. My fingers, thumbs, wrists, ankles, hips, and feet also dislocate, or move off track enough to cause severe pain on a daily basis.
And along with the structural issues I have, my bladder has also been a victim of the cascading failure that is my body. Also due to my extremely elastic tissue, my bladder stretches and stretches until it creates pockets of weak areas, or tears, that cause bacteria to build up and give me kidney/bladder infections so bad I have now had sepsis 3 times. Once to the point of early stage kidney failure. It's become an annual event to have my bladder flushed out by my urologist and every time my bladder fills up with infection, that infection leaks out of the weak spots and sends infection all throughout my blood stream causing it to come out of my pores in the form of deep, painful, open wounds all over my body. I had 71 as of 11/17/2017. ￼￼￼￼It makes me look and feel sick, and it makes it painful to wear clothes of certain fabrics, or even be touched. The bladder issue got so bad my urologist implanted me with a device called an Interstim. It's basically a pacemaker for my bladder that is programed by Bluetooth. Pretty cool right?!?! But, even though it has been a life changer, its not a cure and the trips to the ER and bladder flushes are still an on going situation.
What do I need? There is no cure for EDS, and often there are no cures for the various issues that are caused by EDS so it requires on-going treatment. It's a disease that haunts you. When you finally get one issue under control something else falls apart. My body always needs something, a medicine, a surgery, a CT scan... Because of the various ways my body is breaking down I need a few CT scans done soon. (I can't have MRIs because of my implant) I use my left arm for everything and now it's starting to hurt and dislocate more often. And there is no position where my hip stops hurting enough to let me sit, stand, or even sleep for longer than 45 minutes at a time and the orthopedic surgeon wants to take a look at both joints. I once told a friend of mine when she started a new journey in her life "never be afraid to ask for help when you need it," so here I am, taking my own advice on this scary, new journey of my life. I need help. I need help paying for these tests, I need the strength to face the results of the tests, and I need help making ends meet. I need help being a person again. I haven't been able to work or live alone since my second shoulder repair failed and my ribs started going out, so I moved in with my mom and we try to make it work on just her salary. It's been a full year since I stopped working so the money is now officially tight. I don't qualify for any affordable healthcare premiums because I "qualify for Medicaid" but the state of Texas just cut Medicaid funding so when I applied I was denied. I need these tests done to find out if I need surgery, physical therapy, or both and I'm afraid that, no matter the results, I'm looking at more expenses.
How can you help? I have called and asked around and I have been given quotes for the scans at various places to try and get the best price but I'm looking at anywhere between $350 and $700 per scan, and the cost of treatment will depend on the damage that is found. Any help with these future costs would be a blessing.
I used an old picture of me as teen for this campaign because I miss that girl and like to remember the girl I was. I used to be fun, and down to earth. I was friends with anyone and everyone and was always ready for a good time. ￼ I had dreams and goals and passions that I used to pursue. ￼Now all I do is teeter from one major health issue to the next, and one chunk of money to the next. When all my friends were spending their twenties partying until they grew out of it, getting married and having kids, or building careers for themselves, I was losing a career to illness, putting my body back together, and collecting medical debt. Any help at all is a blessing and more appreciated than you could possibly imagine. If you can't chip in, share this with your friends and spread the word and above all, Thank you all for listening! <3