HSCT treatment needed for MS cure
Donation protected
Anyone who knows me will know I got diagnosed with MS in 2013, a week before finding out I was pregnant with our son Malik, our youngest of 6 children.
My life changed over night, from going into Bath RUH and not knowing what the future held for me or my family. Unfortunately after tests I was told I had MS (multiple sclerosis) a progressive disease which affects my brain and spinal cord I have the relapsing remitting type, which means I will have attacks and have periods of time I won't, but any damage done (scarring to my brain or spinal cord) will remain.
My body's immune system wrongly attacks my nerves and strips the protective coating on the nerve and exposes them causing permanent damage. This affects my legs causing pain and stiffness leaving me unable to walk at times, unable to play with my children or even stand for long periods of times, I need a walking stick when times are that bad, although I'm too proud and embarrassed to use it in public, I'm 31 years old and feel beaten by MS. My hands feel like they constantly have pins and needles and never wake back up. My vision is sometimes blurred and I suffer with such great fatigue I feel like I'm constantly walking through water with bricks strapped to my limbs, I lose my ability to drive or even socialise with friends, but I Still have to keep going and be a Mummy and step Mummy to 6 children who rely on me to look after them, and who have to look after me at such a young age, a house to run like any other person , that's just to describe a few things.
I don't know what the future holds for me or my family, I'm scared I may one day be in a wheel chair watching from a distance my children play unable to join in or run around with them. I'm scared I won't be the wife my husband deserves and he will turn into my full time carer, leaving his opportunities and ambitions behind.
There is a new treatment available abroad a stem cell transplant also known as HSCT, it takes your own stem cells and then it wipes out your old stem cells. The new stem cells are then put back in, to a stage where the MS hasn't began yet, where there is no attack in my immune system, so it's like a re-boot. Any damage already done to my body will stay but it will STOP any further damage and may stop my MS progressing to a stage where I will be severely disabled. The treatment is chemotherapy, while I know this will be a challenging thing to have to go through, and an intense treatment I feel I have absolutely nothing to lose- but my hair, which will grow back!! Panorama have recently done a programme about this treatment which explains the whole procedure or looking in line also does.
I'm a proud person, I don't accept help, even when I need it. I still do more than I should because I feel that's my job.
However to get this treatment I need to raise £30,000 to enable to me make this happen. I'm not expecting hand outs I'm just expecting a bit of understanding that I need to ask as a last resort before I progress to a stage where nothing can be done to treat me. My family need me, it breaks my heart daily to think of what this disease could do. I'm not even sure I'm doing the right thing by asking, I feel I might be judged , but I don't know how else to make this happen, it's worth a shot when you feel trapped and you know the disease is progressing. Please educate yourself and read about MS if you're unsure what it is, even if this makes someone aware it was worth me writing.
Thanks for reading xx
My life changed over night, from going into Bath RUH and not knowing what the future held for me or my family. Unfortunately after tests I was told I had MS (multiple sclerosis) a progressive disease which affects my brain and spinal cord I have the relapsing remitting type, which means I will have attacks and have periods of time I won't, but any damage done (scarring to my brain or spinal cord) will remain.
My body's immune system wrongly attacks my nerves and strips the protective coating on the nerve and exposes them causing permanent damage. This affects my legs causing pain and stiffness leaving me unable to walk at times, unable to play with my children or even stand for long periods of times, I need a walking stick when times are that bad, although I'm too proud and embarrassed to use it in public, I'm 31 years old and feel beaten by MS. My hands feel like they constantly have pins and needles and never wake back up. My vision is sometimes blurred and I suffer with such great fatigue I feel like I'm constantly walking through water with bricks strapped to my limbs, I lose my ability to drive or even socialise with friends, but I Still have to keep going and be a Mummy and step Mummy to 6 children who rely on me to look after them, and who have to look after me at such a young age, a house to run like any other person , that's just to describe a few things.
I don't know what the future holds for me or my family, I'm scared I may one day be in a wheel chair watching from a distance my children play unable to join in or run around with them. I'm scared I won't be the wife my husband deserves and he will turn into my full time carer, leaving his opportunities and ambitions behind.
There is a new treatment available abroad a stem cell transplant also known as HSCT, it takes your own stem cells and then it wipes out your old stem cells. The new stem cells are then put back in, to a stage where the MS hasn't began yet, where there is no attack in my immune system, so it's like a re-boot. Any damage already done to my body will stay but it will STOP any further damage and may stop my MS progressing to a stage where I will be severely disabled. The treatment is chemotherapy, while I know this will be a challenging thing to have to go through, and an intense treatment I feel I have absolutely nothing to lose- but my hair, which will grow back!! Panorama have recently done a programme about this treatment which explains the whole procedure or looking in line also does.
I'm a proud person, I don't accept help, even when I need it. I still do more than I should because I feel that's my job.
However to get this treatment I need to raise £30,000 to enable to me make this happen. I'm not expecting hand outs I'm just expecting a bit of understanding that I need to ask as a last resort before I progress to a stage where nothing can be done to treat me. My family need me, it breaks my heart daily to think of what this disease could do. I'm not even sure I'm doing the right thing by asking, I feel I might be judged , but I don't know how else to make this happen, it's worth a shot when you feel trapped and you know the disease is progressing. Please educate yourself and read about MS if you're unsure what it is, even if this makes someone aware it was worth me writing.
Thanks for reading xx
Organizer
Leanda Alatoum
Organizer
