Suffering in silence. … one in a million x

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15 thoughts on “Suffering in silence. … one in a million x

  1. hi Karen, i did respond earlier today, but somehow i have lost my reply during alterations of the blog.
    thank you for your continual love and support. today has been a really bad day with regards to the hospital and my treatment program. i have received information today, basically stating that i am no further forward in receiving treatment, than i was in December. its been a very tearful day 😦 x

    Liked by 1 person

  2. Hay hun it’s going to be ok we will get answers to the problems that we are dealing with and get the right treatment plan for you just for now keep your chin up and keep strong x

    Liked by 1 person

    • its an emotional roller-coaster right now. its hard to see the wood through trees
      but thank you for being so sweet and staying positive for me
      i cant see a light at the end of the tunnel anymore, but im sure its just a little fog distorting my ray of light xxx

      Liked by 1 person

  3. Have you got in contact with Dr. Burt at Northwest Hospital Chicago? He does HSCT which is a bone marrow transplant With chemotherapy for autoimmune diseases. I just had this procedure done in Russia for my multiple sclerosis and Crohn’s disease. Both diseases have been halted

    Liked by 1 person

    • Hi Colleen, its wonderful to hear from you. I need all the advice, contacts and help that i can possibly receive right now.
      What a wonderful, amazing result for you. i feel so much happiness for you, that this treatment was successful for you 🙂
      I am from the UK and a Stem Cell Transplant has never been used as a treatment to halt or cure Stiff Person Syndrome. However, i do know that research clinical trials are being done outside the UK i.e Canada , Australia , Colorado, Germany.
      So i am left with no option but to personal fund-raise three hundred thousand pounds, to facilitate a stem cell transplant. I am deteriorating so fast without hospital treatment , I have been left since December. So i am left with no option but to try and arrange this myself, before its to late.
      I am going to take down the details you have sent me , and see if i can find out if Dr Burt will carry out this treatment on a person like me , dying of Stiff Person Syndrome.
      I cant thank you enough for contacting me, what a kind heart you have
      much love
      Nerri xxx

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  4. Stay string. Dr. Burt is great but not your only option. There is treatment in other countries as well. Russia, India, Italy, Germany as well.

    Liked by 1 person

    • hi Laurie
      Thank you for helping me today. I have learnt a lot today, and Dr Burt sounds like a wonderful gentleman, caring, compassionate with good results. However, like you say , there are other choices. Different countries, Different doctors. Gosh, i need to do a lot of research , to make sure i have made the absolute best decision , which can potentially lead to a magical future for myself and my family.

      sending you much love
      Nerri xxx

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  5. Hi, I also have stiff person and 3 children. Our lives much parallel each other. I pray you are doing better. My heart goes out to you and your family. I have tried ivig also and rituxin along with weekly high doses of iv sol u medrol and cellcept. I have also looked into stem cell transplant. I pray you are able to get the help you need and keep a strong faith.I live near Chicago, Il but hear that Seattle, WA also is doing clinical trials of stem cell transplant. By now I hope you have a place and raised the money. Contact me if I can help you in anyway. God Bless, Jaime

    Liked by 1 person

    • Hi Jaime
      So, you are also one in a million…..its very lovely to hear from you.
      I am no where near my target yet sweetie, but I have the most amazing fundraising team backing me. It may take a little more time, but everyone is in this for the long hall and will not relent until we have accomplished our goal.

      Yes they have completed the first HSCT on an SPS sufferer , in Seattle, and to my knowledge, the person in question is recovering well

      Please let me know if you decide to also try the HSCT, I would be so happy for you. I hope your insurance company will cover the cost for you, as trying to raise so much money can be very overwhelming at times.

      It really is lovely to hear from you Jaime, someone else knowing what it is like to life a very similar life to mine…..although i do wish i had a magic wand to take the SPS away for you. So if ever i can help in anyway , just like your kind heart has offered to me…….i will be here for you.
      much love
      Nerri xxx

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  6. Hi Nerri,
    Like you, I too have SPS but am not so far along the line as you. Was very touched by your story so made a donation and posted details out to all of my Facebook contacts with a preface from myself so they would know it was legitimate. Some of them have been in touch to say they have also donated and are forwarding the post to their contacts. In doing this, I discovered that Facebook did not deliver the post to everyone so I e.mailed those I had e.mail addresses for to draw their attention to this and wondered whether it might be worthwhile you mentioning this has been happening in your blog lest the same is happening elsewhere and you are missing out on potential donations?
    One of my friends also advised that she had tried to make a donation on your site but that she couldn’t remember her PayPal details so tried to pay by card but it kept on asking her for an address / zip code in the States and, as she lives in Scotland and was paying in pounds Sterling, she was unable to make the donation so eventually gave up trying. Could you advise how to get round that one please?
    Good luck with your quest.
    With love,
    Val xx

    Liked by 1 person

    • Hi Val, thank so much for your donation and for spreading the word around your friends. … I deeply appreciate your kindness, love and generosity. Thankyou with all my heart.
      As for the problems that have been brought to your attention with other sweet peeps making donations … I don’t understand the problem there, so I am discussing this issue with my “one in a million” team as I am writing to you.
      Thank you so much for bringing this to my attention sweetheart, as right now, every penny is worth so very much to me.
      Sending oodles of love and fairy hugs
      Nerri xxx

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  7. Hi Nerri,

    Hope this finds you on a good day.

    Although my condition is not as advanced as yours, I too am beginning to explore HSCT and have been amazed to discover the progress being made in this respect -especially in relation to MS – to the extent that, in many of the States it seems to be being accepted as a procedure by the insurance companies which means their treatment can be covered. Unfortunately, as ee know, being an orphan condition, SPS lags behind.
    Have come across treatments / research using HSCT being done in Canada, Russia, India, Sweden, Egypt, USA (Dr Richard K Burt in Chicago is currently recruiting people with SPS who meet his criteria but could see no indication as to cost.) etc. Am very aware, from what has been written about you, that time could be of the essence in your case so am very concerned about the length of time the fundraising route takes. Unfortunately, I don’t have that kind of money but, needless to say, if I win the lottery……… 😊😊:-)
    I was skimming through various pieces of research and came across an article by someone who had had HSCT and the total cost of the treatment had worked out at approximately £30,000 which is less than you have currently gathered through your appeal so could be an option that is potentially available to you immediately – if you meet the criteria. Unfortunately, I have lost the source but think the treatment took place in India and wondered whether you had also perhaps stumbled across it / investigated it /considered it etc?

    Keep your pecker up.

    Val from Scotland, UK.

    Liked by 1 person

    • Hi Val 🙂
      Thankyou so much for sharing you knowledge and information you are discovering concerning HSCT …… but more so for your kindness, and thinking of me in a way to help the suffering.
      Yes sweetie, I have researched HSCT until i am now at a point where its consumed my life. My regular 11 days of consecutive 3 days IVIg, doesn’t seem to be holding me stable…… despite my sparkly smile and positive persona. Im running out of options, so HSCT seems to be the only way, that i may kick the SPS to the curb.
      Trying to meet such a large target is definitely taking time ….. but i can not thank enough the sweet souls who have donated such a precious gift, and of course my beautiful “One in a Million” fundraising team, who have been the driving force to my campaign. I am blessed to be surrounded by such precious hearts 🙂
      I originally look at Dr Burt, as a potential option, but at the time, he was not recruiting SPS candidates. The reason why Denver is a favourable option, is due to the success of their protocol. Its the same one used by Dr Atkins, and as you know ….. it works 🙂
      I haven’t heard or read about any SPS trials in India, so please excuse my lack of knowledge concerning this question. You are most certainly correct, the cost is far less ….. but do they treat SPSers and do they use the same Protocol as Canada, Denver and Seattle ? This is my main concern, as we know with these countries , each SPS candidate who have been part of their HSCT trials, have been a success so far. However, i do appreciate that the trial is still in its infancy stages for SPS.
      I would be deeply grateful, if you could keep me informed of anything you may continue to find of help. And the same goes here, please if i can assist or help you through your journey in anyway, then i am here my friend.

      much love
      Nerri xxx

      Like

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