1 in a Million, Not 1 of a Million with Stiff Person Syndrome – Bravelets

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1 in a Million, Not 1 of a Million with Stiff Person Syndrome

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About this cause:

I have a rare disease called Stiff Person Syndrome (SPS). It affects only one in a million people worldwide and I don't want to be that special anymore with such an insidious disease. SPS is progressive with no cure but there is a trial for a stem cell transplant that might turn out to be the cure for this disease except insurance won't cover it.

SPS has caused painful stiffening of the body causing me to fall several times injuring my face and back, which started when I was 27. Now the stiffening has progressed to uncontrollable spasms that have lasted for hours sometimes and have been almost daily. The spasms now affect my entire trunk and legs and made it that I couldn't even sit up or even hold my neck. I have been bedridden since October 31, 2013 and have difficulty breathing during the spasms or when I am stuck on my back in bed. It affects all parts of the body but is mainly characterized as a neuroimmunological disease. It is neurological, autoimmune, cardiac (hence my POTS and near syncope as well as stiffening of my heart), pulmonary (my lungs have stiffened to the point that it's restrictive and not chronic so people in the pulmonary department can't help me), etc.

I have failed multiple treatments and after my hospitalization in October my doctor gave up on me. At another hospital in November, doctors had no idea what to do with me and I went without treatment until almost June with my symptoms getting worse and losing all my abilities to care for myself. When I tried to make appointments for my condition with new doctors, clinics refused to see me.

After going back to the Cleveland Clinic, despite them missing my diagnosis years ago, and seeing a new doctor I began to get better with an increase in medications, but the damage of all those months without treatment was already done. I have been traveling back and forth every month to Cleveland for a 2-3 week period to do plasmapheresis to clean my blood from the harmful antibodies of this disease. It only works in about 20% of us and even if it does work for me, to do this every month is as much a burden as doing dialysis. It would even get worse to travel 2.5 hours just one way when winter comes.

Even though there is a potential cure, my insurance will not cover it as it is experimental. The stem cell transplant trial is based out of Seattle with a $400,000 deposit to even begin the trial. It is also being done in Denver as it's secondary location and is much cheaper there. I hope to get a spot in Denver due to cost and distance. (Update - after fighting for 2 years to get stronger and having the wrong insurance, I switched insurance to BCBS and finally was covered for the transplant in Seattle or Denver. I am in the Denver program though Seattle remembers me as the longest waiting clinical trial participant for this as I started in October 2013. Now I don't have to pay hundreds of thousands, but I still will have to pay for travel, lodging and medical procedures not covered under the trial/insurance agreements. So that's the little good news in all of this even though it's never good news to have to have surgery or be chronically ill. So I put off going to Denver as my mom had breast cancer but she is better now, except that when I finally got to Denver and qualified, the transplant got suspended days before I was to start. Unfortunately after the suspension was lifted, my father just got news that his colon cancer was no longer in remission and spread to a kidney and both lungs and I will have to wait even longer as my father cannot be left alone during radiation and possible surgeries. So, I will have to redo many of the difficult testing done to re-qualify for the transplant as I did back in the summer of 2015 but the transplant hospital is not worried as I did well on almost all tests and was able to correct some things very quickly such as my iron levels with an iron infusion at my local hospital.

Before SPS, I was living my life working at the Social Security Administration helping those who were disabled too. Such irony that I became like some of my worst claimants such as those who were terminal. Once the SPS started at 27, I lost much of my life. I used to enjoy traveling all over the country going to museums, conventions, etc. meeting actors, diplomats and politicians, journalists, etc., but it was my last trip in 2007 that I lost all my independence as I fell on my face on the pavement in Houston and then I later fell getting off the escalator in my hotel hitting my head. I was by myself and was never able to walk the same though I can't walk at all now after what happened in 2013. I was no longer able to cook or bake for myself and I'm a great cook and I couldn't go to parks to enjoy nature anymore as well. I was an amateur photographer and can't enjoy that either and that's why I loved going to my local museum as well as traveling to art events in other cities too.

I am a fighter and refuse to give up hope. Please help me raise the money needed so I can have that stem cell transplant. Let's help me beat this nasty disease and get my life back! Please, please, please do what you can to help me. It all adds up. I am begging you all to help me get back to the happy person I once was who was able to help those less fortunate. Even though I am not able to get around I still help others to my own detriment and I am trying to focus on getting better but I can't stop helping others. So once again help me get this transplant so I can enjoy life and help others in a safer manner that won't cause me to keep deteriorating.

I have fought so hard that my story has made it to several online news carriers including CNN.com as well as local TV interviews on a NBC affiliate as well as a more recent interview in September on an ABC/Disney affiliate. Here are some of the links:






http://fnd.us/c/7qgTa/cy/23uWL0 or by direct free donation with no fees to PayPal if you already have an account using my address of kassem_l@hotmail.com at PayPal.

Thank you so much for donating whatever you can. Also please share this site with all your friends. There are many philanthropic people out there and you never know who will come to my aid. Again, please share this link with your friends as it's always best to share. My other donation account run by my sister that is listed in my online stories is no longer available to use. Now that I can type again and handle a laptop, I wish to take more control as my sister is very busy (another sign that I got strong enough to requalify for the transplant even though I was denied by Seattle during my 2013 hospitalizations). Thanks again.