SPS Please Help For Recovery

For the past 12 years, I've been very sick with an extremely rare illness, Stiff Person Syndrome (SPS).
It took more than 5 years to get a proper diagnosis of SPS. All that time, I knew that something was wrong with my central nervous system. I was hyper-reflexive, had decreased movement and muscle spasms along the entire right side of my body. I couldn’t breathe – even though I was on 60mg of Prednisone and had two inhalers. It felt like 30 people were sitting on my chest with sharp chest pain, shortness of breath and the right side of my rib cage was completely collapsed.  And over time I could not sit in a chair or ride in a car.  I could not perform daily activities and was progressively getting worse, no one knew what to do and I was dying.

The top medical centers in the country kept misdiagnosing me. Cornell in NYC did my spinal tap but didn't know what to do. I sent my medical records, which included MRIs and more than 50 pages of blood work and EMG/NCV results, to the prestigious Mayo Clinic in Minnesota. They said they had nothing to help me.
Johns Hopkins misdiagnosed me twice. Seven years ago, they told me to stop all the medications that were keeping me alive and prepare for the worst case. They did not even consult with my doctor in New York City, who was helping to keep me alive with very specific medicines. He wanted to try IVIG infusions as the next step to help me since he and my Immunologist knew I had some type of autoimmune mediated neurological issue, but were still trying to diagnose it. Johns Hopkins told me not to do the IVIG treatments at all and get a wheelchair if I needed one soon.

Right Treatment: First Time I Could Move My Head
In 2009, after my second misdiagnosis at Johns Hopkins, 3 days later I tried IVIG infusions with my Immunologist in NYC. In my heart, I trusted these doctors, had faith that they really cared and knew what they were doing. The first week, I had 3, six hour IVIG infusions that my Immunologist specifically prescribed to help boost my immune system. For the first time, I was able to move my head an inch – what a relief after so much time spent as an immovable brick wall. That was when my Rheumatologist really knew we were on the right track. So I was on twice-weekly, high-dose IVIG infusions for a year. The treatments provided some relief and helped my brilliant rheumatologist finally make the proper diagnosis of Stiff Person Syndrome.
I achieved progress in my fight. I taught myself how to walk again in a swimming pool. But, I was plateauing. My medical team referred me to a famous New York City oncologist known for innovative treatments. She administered a round of non-FDA approved chemotherapy. It was difficult to get the drug. No hospital would even admit me as a patient since it wasn't FDA approved, but my life was on the line and it was my only chance.
This experimental treatment wasn't covered by my health insurance since health insurance doesn't pay for experimental procedures. The first round didn't work, but my team was aggressive and created a protocol to give me a second round. It put my “anti-GAD65” into a blood level antibody remission. I am so thankful that it worked to save my life.
However, years of an elevated anti-GAD antibody badly damaged my muscles along the right side. For over the past seven years, I have been doing a weekly regimen in NYC to work on the damaged places along the right side of my body to help get more movement back, inch-by-inch, and breathe better.

Rare Diseases: No Foundation. No Wristbands. No Help.
I urgently need help paying for essential items in order to survive and keep going with the rest of this recovery. At the moment, my recovery efforts are beating the latest research study results and have been making medical history worldwide. My treatments have been very expensive though. I haven't been able to work for over 4 years, and have critically needed money for basic living expenses and medicines, along with the specific treatments I need to heal my body and recover. I was trying to work a part time job best I could with my face blown up on 60 prednisone, heat patches on neck and ribs, leg taped up, limping in badly with my cane hiding it so that I wouldn't be discriminated against and a wrist brace on with an IV needle under my shirt and an inhaler in my bag. Not safe to do, but I was hurting myself trying to work part time to pay for treatments I desperately needed to make it this far otherwise I would have died or be permanently in a wheelchair with no hope for ever healing.
Patients living with rare diseases struggle like any other patient. But, more often than not, it feels like fighting for life alone in a world that doesn’t truly understand the challenges of having a very rare illness due to a lack of support, misinformation, and a lack of charitable organizations or adequate social services, along with many state systems that are very poorly run, in addition to a largely broken healthcare system.
If I had a more common illness like cancer, MS, ALS, Leukemia, there would be a big medical foundation for financial support and many other types of assistance. With SPS, I haven't had that and it has been a situation in need of dire help. A friend graciously offered to run the New York City marathon in my name to help raise money for my medical bills and recovery. They said that SPS is too rare, and since I don’t have cancer or leukemia they couldn't help me. So they suggested I set up this page to get help with fundraising for expenses needed to save my life and make a recovery.
There is no medical foundation for Stiff Person Syndrome. It's extremely rare and poorly understood by the medical community. My medical team in New York City are the only people who know how to properly treat me, and we have been making history worldwide. It is a miracle of God and medicine that I am alive, and I am thankful for each day and anything positive.  Please help me get urgent support needed by donating to my page, and sharing it with your friends, colleagues, churches, community groups, synagogues and other people who can help me. Getting more support right now will literally make a life saving difference during critical times. PLEASE DONATE TODAY TO HELP ME GET TREATMENTS URGENTLY NEEDED TO HEAL AND IMPROVE ALL FUNCTION.

Donations

  • Philip Stephens 
    • $10 
    • 4 d
  • Anonymous 
    • $500 
    • 18 d
  • Anonymous 
    • $50 
    • 22 d
  • Philip Stephens 
    • $10 
    • 1 mo
  • Philip Stephens 
    • $10 
    • 1 mo
See all

Organizer

K Ann 
Organizer
West New York, NJ
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