Without trials of this cure/treatment in the UK, those diagnosed are having to fund raise huge sums of money to try and gain access to HSCT abroad. We recently have gained access to a new medical journal which highlights the benefits these trials are having and as such are petitioning for HSCT trials to be made available for SPS sufferers in the UK.Without treatment those with SPS have very limited options and their futures are bleak.
Treatment abroad is expensive and adds extra pressure for those needing to travel with weakened immune systems, recovery time and risk of infection all needing monitoring.It would be safer all round to get this treatment in the UK so please show your support by signing this petition.
Updates
November 19, 2014
The momentum behind this initiative reflects a profound recognition of the urgent need for domestic access to HSCT. It is heartening to see such widespread agreement that patients should not face the burden of traveling abroad to secure vital medical care.
20 Comments
When I went to the House of Commons on March 3rd as a representative of SPS UK, I handed letters for Jeremy Hunt (Health minister) and Liz Howell (Labour). Despite asking for a response, I have not recieved one from either of them. I had asked why HSCT is not being trialled for SPS!
I think SPS is not so rare as it seems. Many People are diagnosted long years wrong (psychosomaticlly) like me.
This horrible life-robbing disease needs to be treated EVERYWHERE with the life enhancing possibilities of HSCT
wish this treatment was given priority instead of the money wasted on space projects!
Think of money wasting projects that happen in the UK, sad to see someone fighting to save their life with a great community spirit to help. This should be part of an NHS plan
Signed from the USA
+ for patients suffering from sps in the rest of Europe
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Without trials of this cure/treatment in the UK, those diagnosed are having to fund raise huge sums of money to try and gain access to HSCT abroad. We recently have gained access to a new medical journal which highlights the benefits these trials are having and as such are petitioning for HSCT trials to be made available for SPS sufferers in the UK.Without treatment those with SPS have very limited options and their futures are bleak.
Treatment abroad is expensive and adds extra pressure for those needing to travel with weakened immune systems, recovery time and risk of infection all needing monitoring.It would be safer all round to get this treatment in the UK so please show your support by signing this petition.
Updates
November 19, 2014
The momentum behind this initiative reflects a profound recognition of the urgent need for domestic access to HSCT. It is heartening to see such widespread agreement that patients should not face the burden of traveling abroad to secure vital medical care.
20 Comments
fellow SPS, in so much pain, hope this petition gets to 100k for you to get cured. prayers your way
When I went to the House of Commons on March 3rd as a representative of SPS UK, I handed letters for Jeremy Hunt (Health minister) and Liz Howell (Labour). Despite asking for a response, I have not recieved one from either of them. I had asked why HSCT is not being trialled for SPS!
I think SPS is not so rare as it seems. Many People are diagnosted long years wrong (psychosomaticlly) like me.
This horrible life-robbing disease needs to be treated EVERYWHERE with the life enhancing possibilities of HSCT
wish this treatment was given priority instead of the money wasted on space projects!
Think of money wasting projects that happen in the UK, sad to see someone fighting to save their life with a great community spirit to help. This should be part of an NHS plan
Signed from the USA
+ for patients suffering from sps in the rest of Europe
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fellow SPS, in so much pain, hope this petition gets to 100k for you to get cured. prayers your way