Please help me to get rid of my MS
Donation protected
Dear friends,
In 2013 I was diagnosed with RRMS - relapsing, remitting multiple sclerosis. I was 48 years’ old at the time.
Today I am 56 years’ old and time is running out for me to have the HSCT treatment that I need to get rid of this life-changing disease.
Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move, think and feel.
For me, having MS means that I am constantly in pain. I suffer from bouts of fatigue, and I cannot concentrate on a specific task for too long. I also sometimes forget what I was about to do and fumble my words.
Reading and writing are both difficult for me to do. I used to love reading and would often read two books at the same time. Now I cannot even read one full page without drifting away from what I am reading. When I write, my handwriting can be illegible.
I used to be a fairly good runner and would run three to five times a week as well as taking part in a couple of 10K charity runs. Today, if I try to go for a walk with my wife and our dog, I cannot keep up with them and have terrible pain after only a few minutes of walking.
And finally, and most embarrassingly, I have terrible problems with bladder control.
Since having MS I cannot run any more but find that I can cycle, and I do this regularly as I feel it helps to slow down the progression of my MS. However, I have to take constant breaks to go to the bathroom due to the bladder control issues.
I am currently on my second type of ‘disease-modifying’ medications that are supposed to suppress the severity and frequency of MS episodes. The reason for moving on from the first medication was that it was not suppressing the episodes and I continued to have them. These episodes can consist of mind-numbing pain in one or more areas of my body or loss of vision in one or both of my eyes. Whatever the episode is, when it occurs, it usually involves excruciating pain and is extremely scary for both me and my family.
Due to all the above, I have taken the decision to travel to the National Pirogov Medical Surgical Centre in Moscow, Russia to have AHSCT treatment for my MS. This is currently planned for May / June of 2022.
Autologous hematopoietic stem cell transplantation (ASHCT) is a type of transplantation that uses the person's own stem cells particularly from peripheral blood. These cells are collected in advance, stored at sub-zero temperatures, and returned to the persons’ body at a later stage, after high dose chemotherapy or immunosuppressive therapy.
The Pirogov Centre in Moscow has been conducting this treatment for more than 30 years now with an exceptional success rate.
I am determined to undertake this treatment so that I do not need to live the rest of my life having to take medication every day, that has its own unpleasant side effects, or the potential for at any moment to have a MS episode that would disable me to the point where I cannot walk or use my limbs ever again.
I need your help please to achieve this goal. AHSCT costs approximately £50,000 in Russia. Here in the UK, where I do not qualify for the treatment under the NICE / NHS guidelines, it costs £140,000.
I cannot afford either of these costs. However I will be funding some of this out of my own pocket, but I desperately need your help to reach this £50,000 target.
I'm asking you to please help me obtain my goal of raising enough money to allow me to have this treatment.
Anything that you can give to help me pay for the treatment in Russia will be amazing.
I cannot express how much this means to me.
Thank you so much.
Martin
In 2013 I was diagnosed with RRMS - relapsing, remitting multiple sclerosis. I was 48 years’ old at the time.
Today I am 56 years’ old and time is running out for me to have the HSCT treatment that I need to get rid of this life-changing disease.
Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move, think and feel.
For me, having MS means that I am constantly in pain. I suffer from bouts of fatigue, and I cannot concentrate on a specific task for too long. I also sometimes forget what I was about to do and fumble my words.
Reading and writing are both difficult for me to do. I used to love reading and would often read two books at the same time. Now I cannot even read one full page without drifting away from what I am reading. When I write, my handwriting can be illegible.
I used to be a fairly good runner and would run three to five times a week as well as taking part in a couple of 10K charity runs. Today, if I try to go for a walk with my wife and our dog, I cannot keep up with them and have terrible pain after only a few minutes of walking.
And finally, and most embarrassingly, I have terrible problems with bladder control.
Since having MS I cannot run any more but find that I can cycle, and I do this regularly as I feel it helps to slow down the progression of my MS. However, I have to take constant breaks to go to the bathroom due to the bladder control issues.
I am currently on my second type of ‘disease-modifying’ medications that are supposed to suppress the severity and frequency of MS episodes. The reason for moving on from the first medication was that it was not suppressing the episodes and I continued to have them. These episodes can consist of mind-numbing pain in one or more areas of my body or loss of vision in one or both of my eyes. Whatever the episode is, when it occurs, it usually involves excruciating pain and is extremely scary for both me and my family.
Due to all the above, I have taken the decision to travel to the National Pirogov Medical Surgical Centre in Moscow, Russia to have AHSCT treatment for my MS. This is currently planned for May / June of 2022.
Autologous hematopoietic stem cell transplantation (ASHCT) is a type of transplantation that uses the person's own stem cells particularly from peripheral blood. These cells are collected in advance, stored at sub-zero temperatures, and returned to the persons’ body at a later stage, after high dose chemotherapy or immunosuppressive therapy.
The Pirogov Centre in Moscow has been conducting this treatment for more than 30 years now with an exceptional success rate.
I am determined to undertake this treatment so that I do not need to live the rest of my life having to take medication every day, that has its own unpleasant side effects, or the potential for at any moment to have a MS episode that would disable me to the point where I cannot walk or use my limbs ever again.
I need your help please to achieve this goal. AHSCT costs approximately £50,000 in Russia. Here in the UK, where I do not qualify for the treatment under the NICE / NHS guidelines, it costs £140,000.
I cannot afford either of these costs. However I will be funding some of this out of my own pocket, but I desperately need your help to reach this £50,000 target.
I'm asking you to please help me obtain my goal of raising enough money to allow me to have this treatment.
Anything that you can give to help me pay for the treatment in Russia will be amazing.
I cannot express how much this means to me.
Thank you so much.
Martin
Organizer
Martin Segal
Organizer
England