Save Me from Stiff Person Syndrome
$4,843 Raised
16% of $30k goal
37 contributors
2 Years running
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I have a rare disease called Stiff Person Syndrome (SPS). It affects only one in one 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 ... More ...
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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.

SPS has caused painful stiffening of the body cauisng 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.

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 will be traveling back and forth every month to Cleveland for a 2 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 and is much cheaper there. I hope to get a spot in Denver due to cost and distance.

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 even if all you can afford is a $5 donation. 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 mine 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 interview on a NBC affliate. Here are the links:

http://www.cnn.com/2014/02/05/health/stiff-person-syndrome-irpt/index.html

http://ireport.cnn.com/docs/DOC-1068776

http://www.nbc24.com/news/story.aspx?id=983670#.U_SvC5Ug_IV

http://globalgenes.org/bringing-awareness-to-a-one-in-a-million-disease-my-sister-has-stiff-person-syndrome/

 

For those who are close to me and my family, you may donate directly to avoid the fees on this site. Others may do the same by contacting me and I can have your donation posted here as an offline donation.

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 is still available to use, but now that I can type again and handle a laptop, I wish to take more control as my sister is very busy. Thanks again.

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