Halt Angie's MS with HSCT
Donation protected
Hi, my name is Angie Fleet, and I live in Poole in Dorset. I am a loving mum to my 16 year old daughter Lauryn and have been with my wonderful husband Carl for 20 years
I was diagnosed with multiple sclerosis shortly after my daughter was born in 2000 and have had many symptoms ranging from blindness in one eye to not being able to walk. I was only 23 at the time.
I had a few years of various highly accute symptoms but it stabilised for nearly 10 years where my symptoms were quite manageable, unfortunately it has started to rear its ugly head again and some of my old symtoms like limping and losing sensation in my right hand have come back and have not gone away this time.
MS is a progressive disease which can attack at any time and affect just about anything and everything.
Nerve fibres have a protective sheath surrounding them called myelin and my body sees this as a foreign object to be attacked. This cause lesions(scarring) in my nervous system so messages are not sent through properly or not at all. Multiple sclerosis literally means multiple scarring.
The last couple of years have made me anxious as my balance is poor and I cannot walk very far without limping or needing to rest.
I do have a very supportive family that have loved and helped me along this difficult journey. My daughter is the light of my life and I want to be able to do all the things that mums should in the future. My husband is my true love and my rock and I wish I can be healthy and happy for him and we can look forward to our future together but my future is uncertain and very likely that I will only get worse without treatment.
BBC1 ran a short documentary on the 18th of January called "Can you stop my Multiple Sclerosis?" and the programme highlighted one of the two trials being done here in th UK . In the programme they showed that it IS possible to halt MS in its tracks and even see some improvements to damage already done too.
The more damage you have or the longer you have had MS then the less likely it is to help with nerve damage that has already happened but I am fortunate that if I stopped it now I could live a very happy disease free life with only some minor problems that may go even go away.
Unfortuantely I do not meet the very strict criteria for any of the trials happening in the UK but there is another hope for me.....
There are several hospitals around the world which have a lot more experience in using this treatment than in the UK. They have treated patients with all varieties and severities of MS and have seen results that are much more valuable than any of the current drug options which can also cause other problems to the patient being treated, the worst expample ofthis being a brain infection calleed PML(Progressive multifocal leukoencephalopathy) which in worst case could lead to death.
The treatment is called Autologous Hematopoietic Stem Cell Therapy (HSCT) and is a very aggressive treatment. It is done by harvesting my own stem cells before using chemotherapy to kill off my existing immune system. My stem cells are then given back to me by transfusion to reboot my immune system without the memory of my MS. This has shown to be effective in 75-90% of those treated so far with my current form of MS (relapsing-remitting) and only time will tell if can halt disease activity for a lifetime.
The cost of this will be in the approximately £50,000 which I hope to fundraise, partially through this fundraising group and other local fundraising activities.
I do hope you feel you can help me in my efforts to halt the progression and change my life for the better!
Thank you :)
I was diagnosed with multiple sclerosis shortly after my daughter was born in 2000 and have had many symptoms ranging from blindness in one eye to not being able to walk. I was only 23 at the time.
I had a few years of various highly accute symptoms but it stabilised for nearly 10 years where my symptoms were quite manageable, unfortunately it has started to rear its ugly head again and some of my old symtoms like limping and losing sensation in my right hand have come back and have not gone away this time.
MS is a progressive disease which can attack at any time and affect just about anything and everything.
Nerve fibres have a protective sheath surrounding them called myelin and my body sees this as a foreign object to be attacked. This cause lesions(scarring) in my nervous system so messages are not sent through properly or not at all. Multiple sclerosis literally means multiple scarring.
The last couple of years have made me anxious as my balance is poor and I cannot walk very far without limping or needing to rest.
I do have a very supportive family that have loved and helped me along this difficult journey. My daughter is the light of my life and I want to be able to do all the things that mums should in the future. My husband is my true love and my rock and I wish I can be healthy and happy for him and we can look forward to our future together but my future is uncertain and very likely that I will only get worse without treatment.
BBC1 ran a short documentary on the 18th of January called "Can you stop my Multiple Sclerosis?" and the programme highlighted one of the two trials being done here in th UK . In the programme they showed that it IS possible to halt MS in its tracks and even see some improvements to damage already done too.
The more damage you have or the longer you have had MS then the less likely it is to help with nerve damage that has already happened but I am fortunate that if I stopped it now I could live a very happy disease free life with only some minor problems that may go even go away.
Unfortuantely I do not meet the very strict criteria for any of the trials happening in the UK but there is another hope for me.....
There are several hospitals around the world which have a lot more experience in using this treatment than in the UK. They have treated patients with all varieties and severities of MS and have seen results that are much more valuable than any of the current drug options which can also cause other problems to the patient being treated, the worst expample ofthis being a brain infection calleed PML(Progressive multifocal leukoencephalopathy) which in worst case could lead to death.
The treatment is called Autologous Hematopoietic Stem Cell Therapy (HSCT) and is a very aggressive treatment. It is done by harvesting my own stem cells before using chemotherapy to kill off my existing immune system. My stem cells are then given back to me by transfusion to reboot my immune system without the memory of my MS. This has shown to be effective in 75-90% of those treated so far with my current form of MS (relapsing-remitting) and only time will tell if can halt disease activity for a lifetime.
The cost of this will be in the approximately £50,000 which I hope to fundraise, partially through this fundraising group and other local fundraising activities.
I do hope you feel you can help me in my efforts to halt the progression and change my life for the better!
Thank you :)
Organizer
Angie Fleet
Organizer