This logo was designed for me by a very talented young lady, Lauren Jones ♡
Thankyou my darling, for looking deep into the windows of my soul, and creating something so exquisite and symbolic to me.
You captured all that I feel in my heart. This logo with become part a large part of who I am, in my representation of my fight against the ghost of Stiff Person Syndrome ……and my determination to continue fundraising with my wonderful Nerri-Berri Team in the hope of financing the Stem Cell Transplant procedure
Thank you once more beautiful Lauren xxx
Fighting against a ghost...Stiff Person Syndrome 
Hi Nerri,
Kept my fingers crossed for you on Monday. Wondering how you got on?
Val xx.
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Hi sweet Val
Thankyou for thinking about me Monday, you are so kind.
I am absolutely exhausted …. iv been in bed since. … but any pian is well worth the outcome of Mondays meeting. The consultant was one of the most compassionate, caring and understanding medical professional I have been blessed to cross paths with. I also meet another member of the team who was so beautiful beyond words whilst dealing with one of my spasms.
The out come was very exciting indeed xxx
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Sounds like you have had a worthwhile experience and finally met with a very focused team. So…….is it all systems go or are you waiting for further deliberations?
Will it be taking place in the UK or will you still have to travel abroad for treatment?
Exciting times.
xx
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Yes my darling, a very focused and understanding team indeed 🙂
As long as everything runs to plan, yes it’s all systems go 🙂 couldn’t have asked for a better outcome. This team really has the fighting spirit. It appears I will become the “prototype” in the UK …. but there is a long road ahead for me. This is no bed of roses. But compared to six years of hell …. and the end being in sight …. I will punch back the ghost harder than I have ever done.
This brings hope to the UK sweetie 🙂 xxx
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That is brilliant news! So……when will we hear more about it? Who is doing it, where it is being done, ( costs – if this still applies if it is done under the NHS in UK etc.)? Seems like it it is hush, hush at the moment.😊😷
Interestingly, I was corresponding with another lady who has SPS in England, that sounds as though it is on a par with yours, who was telling me that her consultant has advised her that, depending on how her next treatment plan goes, he is thinking to refer her for hsct in the UK as apparently it is pretty common for MS sufferers to get treated this way nowadays ( has been going on for over 20 years in the States) so he is thinking of arguing a case for her. Now, that is the first time I have heard talk of it being actually done in the UK -apart from what you have been relaying to us. He seems to be building up her portfolio to show that other treatments failed etc and then, who knows what may come out of that too. Exciting times! Suddenly glimmers of light are appearing everywhere. One of the problems with SPS apparently has always been a lack of evidence that it is safe and can work because there was not a big enough catchment pool to draw from. Now, with the various forums that are setting up, and interest that has been generated, it is possible to get that pool of people to go through the treatment etc. so we all need to pull together on this. I have started raising awareness re – auto-HSCT with patients who attend the same hospital as me for IVIG who suffer from any of the autoimmune conditions that Stem cell therapy can treat – not just SPS. This is BIG stuff and sure, we have a hard old time of it but, so do many others with auto-immune problems that manifest neurologically and in other ways and the more publicity we can get for that kind of treatment, the more likely it is to attract funding and specialists into the field so that increasing numbers can be treated etc. and further research can take place to refine the techniques.
Happy days! 😊
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