Help Clare Stop MS!
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Hi, I’m Clare, I am 29 years old, and I was born in Ireland. I moved to the UK to study and have lived here ever since. I am currently working and I absolutely love my job! I’ve had to work a bit harder than most to get where I am because back in 2011 when I was 22 years old I was diagnosed with MS (Multiple Sclerosis). I had never heard of MS before and the diagnosis naturally came as a shock to me and my family.
Some background on what MS actually is - MS is a lifelong condition in which the immune system attacks the brain and spinal cord causing damage and leaving behind scars called lesions. These lesions can cause any number of issues depending on where the scarring is including difficulty with mobility, vision problems and many more. My first attack started with my vision though with treatment this resolved after some time. I was lucky to have a few good years in which I was able to live a relatively normal life in my new home and enjoy university and all the city had to offer me. I relapsed in 2014 and this time it was my mobility which was affected. I have never recovered.
Over the last few years my walking has gotten steadily worse, as well as a collection of other symptoms I have had to battle with. I worry if things carry on I won’t be able to remain in work. I have already had to make adjustments at work as I cannot walk very far. I have lost a lot of my independence as I rely a lot on taxis to get around as even walking to the bus stop is too far. I worry when I go new places how far I’m going to have to walk and if I’ll be able, as a result I often avoid going out. With the progression of my condition I fear it is a only a matter of time before I am confined to wheelchair.
Treatment currently aims to reduce the amount of attacks a person has, eventually the majority of people with MS enter a progressive phase for which there is no treatment, only managing symptoms as they appear. However in recent years research has shown a very promising new treatment – HSCT. This involves harvesting of a person’s own stem cells prior to undergoing chemotherapy to wipe out the faulty immune system. The stem cells are then transplanted back and to become the new immune system. HSCT has shown very promising results and is well established in many countries. However the UK has been very slow to offer this treatment outside of trials. In December I saw a consultant here in the UK who said he would consider giving me the treatment, unfortunately I found out a couple of weeks ago that I don’t meet the strict criteria. So now my only option is to travel abroad for HSCT.
I have already failed three treatments, the last one has now caused me to develop an underactive thyroid on top of everything else. This treatment has been shown to be effective STOPPING MS in roughly 80% of sufferers, on top of that many people see improvements as well. While any improvements would be welcome my goal is to STOP MS before it takes anything more from me.
Unfortunately traveling means quite a hefty price tag of approximately £65,000. I cannot ever hope to raise this amount by myself. I hate having to ask for help like this, especially as I know everyone is struggling to make ends meet in this current economic climate but I can’t bear to think about the alternative.
I am very grateful for any support you can offer me.
Thanks
Clare xxx
Some background on what MS actually is - MS is a lifelong condition in which the immune system attacks the brain and spinal cord causing damage and leaving behind scars called lesions. These lesions can cause any number of issues depending on where the scarring is including difficulty with mobility, vision problems and many more. My first attack started with my vision though with treatment this resolved after some time. I was lucky to have a few good years in which I was able to live a relatively normal life in my new home and enjoy university and all the city had to offer me. I relapsed in 2014 and this time it was my mobility which was affected. I have never recovered.
Over the last few years my walking has gotten steadily worse, as well as a collection of other symptoms I have had to battle with. I worry if things carry on I won’t be able to remain in work. I have already had to make adjustments at work as I cannot walk very far. I have lost a lot of my independence as I rely a lot on taxis to get around as even walking to the bus stop is too far. I worry when I go new places how far I’m going to have to walk and if I’ll be able, as a result I often avoid going out. With the progression of my condition I fear it is a only a matter of time before I am confined to wheelchair.
Treatment currently aims to reduce the amount of attacks a person has, eventually the majority of people with MS enter a progressive phase for which there is no treatment, only managing symptoms as they appear. However in recent years research has shown a very promising new treatment – HSCT. This involves harvesting of a person’s own stem cells prior to undergoing chemotherapy to wipe out the faulty immune system. The stem cells are then transplanted back and to become the new immune system. HSCT has shown very promising results and is well established in many countries. However the UK has been very slow to offer this treatment outside of trials. In December I saw a consultant here in the UK who said he would consider giving me the treatment, unfortunately I found out a couple of weeks ago that I don’t meet the strict criteria. So now my only option is to travel abroad for HSCT.
I have already failed three treatments, the last one has now caused me to develop an underactive thyroid on top of everything else. This treatment has been shown to be effective STOPPING MS in roughly 80% of sufferers, on top of that many people see improvements as well. While any improvements would be welcome my goal is to STOP MS before it takes anything more from me.
Unfortunately traveling means quite a hefty price tag of approximately £65,000. I cannot ever hope to raise this amount by myself. I hate having to ask for help like this, especially as I know everyone is struggling to make ends meet in this current economic climate but I can’t bear to think about the alternative.
I am very grateful for any support you can offer me.
Thanks
Clare xxx
Organizer
Clare Mullarkey
Organizer
