My journey…..fighting the ghost of Stiff Person Syndrome x

My soul purpose for creating this blog……well it is for a number of reasons, but I only have one wish……and that is to have the gift of time, the chance to live.

my name is Lindsay, or Nerri as my friends call me. I am 33 years old, a university graduate, married my childhood sweetheart, and we share the three most amazingly precious children together 🙂 I  was living my dream, until my life was shattered to pieces when I woke on the morning 7th of June 2009 

I am “one in a million”, diagnosed with a rare neurological disease with autoimmune characteristics , known as Stiff Person Syndrome (SPS). I am rapidly deteriorating to the point that without much needed treatment, I am going to die.

I would like to share my personal story, in the hope that i can raise awareness of how debilitating, dangerous and life threatening this horrendous illness is for me. This is my attempt , out of sheer desperation, to somehow get my voice heard, before it is too late.

One In A Million Fundraising Appeal

 Please like my Facebook page below to show your support

Gofundme

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Suffering in silence…One in a Million

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13 thoughts on “My journey…..fighting the ghost of Stiff Person Syndrome x”

  2. thank you my darling. things are going from bad to worse, i am deteriorating fast, and have been let down again today concerning my treatment plan. i am slowly dying hunnie. Jason has left here absolutely fuming, and is heading to the Argus office in Newport as i am typing this to you. when is the medical sector going to realize that Stiff Person Syndrome is destroying me from the inside out 😦

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  3. Thinking of you. Hope someone out there see’s this and gives you the treatment you deserve. It’s disgusting that you and your family have to fight to get the medical attention that you need xx

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    • Hi Joanne

      Thank you so much for your support and following my journey. I just noticed i have had 1496 views in just three days. I have so much more to write, videos and photos to show, i am hoping it will gain someones attention in the medical profession who could possibly help facilitate the Stem Cell Transplant i so desperately need.
      Its deeply touching that i am in your thoughts
      much love
      Nerri xxx

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    • Hi Lynne

      I too found this video difficult to watch. I remember the fist time Jason showed it to me, i had tears steaming down my face almost hysterical , because i could not believe it was me. When i go into full body spasm, it affects my facial muscles too, locking my eyes and jaw shut. So even though i had suffered the bone breaking pain time and time again, i didn’t actually know what i looked like, what others could see that i couldn’t.

      I am sending you all my love and happy wishes, i am so sorry you are haunted by this illness too. I i can help you in any way….i am here for you.

      Please take care, and i some how hope that this blog will help raise awareness of Stiff Person Syndrome, and one day this dangerous illness may be known and understood
      much love
      Nerri xxx

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