My HSCT Journey to beat my MS
Donation protected
Hey everyone!
Some of you may or may not know, in 2015 I was diagnosed with progressive, chronic illness - Relapsing Remitting Multiple Sclerosis. This is where your immune system attacks itself and damages the nerves of your brain and spinal cord.
Over the years, I have tried and failed a number of drugs and seen my illness progress rapidly in terms of physical symptoms and on my MRI scans. Each person who suffers with this does suffer differently; no two people will walk the same path in their symptoms. I have gone from experiencing numbness and altered sensations in body, mottled skin, blurred vision, extreme fatigue, pins and needles and muscle spasms and pains to different parts of my body to not being able to walk, write or use one half of my body.
Some may look and think I don’t ‘look’ sick .. this is because most people will only see me in remission. Where the big symptoms settle down and only the ones that can be hidden remain. The biggest fear with MS is you don’t know how long your relapse will last or if you will ever come out of it. I definitely have never been the same since my first relapse.
I was offered HSCT on the NHS and then found out I had fallen pregnant. They’ve since wanted to trial me on drugs that will only hope to slow down progression but cannot guarantee it.. the drugs which so far haven’t managed to control my MS.
Hematopoietic Stem Cell Transplantation (HSCT) attempts to “reboot” the immune system, which is responsible for damaging the brain and spinal cord in MS. In HSCT for MS, hematopoietic (blood cell-producing) stem cells, which are derived from a person’s own (scientifically referred to as “autologous”) bone marrow or blood, are collected and stored, prior to depleting much of the immune system using chemotherapy. Then the stored hematopoietic stem cells are reintroduced to the body. The new stem cells migrate to the bone marrow and over time reconstitute the immune system.
With having a young baby & relapses becoming more frequent and each MRI since diagnosis showing further decline and newer leisons, I have been offered HSCT privately at London Bridge Hospital. I don’t want to imagine a life where in the next 5-10 years I’m unable to take care of myself or my son so the sooner I can potentially stop the disease progressing any further than it has I will.
It’s fair to say I’ve definitely learnt that people don’t really know much about an illness until they’re linked to it directly. I for one was completely in that boat. Until I was diagnosed with a chronic illness I had no idea what MS was, how it would change my little world or what it could do. My first learnings made me worry about ending up in a wheelchair before I had even lived or one day waking up paralysed or blind because of it and so on.
The cost of this procedure from collecting my stem cells, chemotherapy, reintroducing my stem cells and hospital stay in isolation for 4-6 weeks is £68,000. Myself and my family have already pulled together over half of the cost and I’m hoping to raise any funds to contribute to this. I will continue myself to raise further funds to better my health for my family and I’m hopeful that you wonderful people could do the same.
Now I wake up grateful for the days when I can feel my legs or walk without having to hold onto someone or even be able to write, where I can control my body enough to drive myself where I need, and be able to do the simplest of things like feeling strong enough to hold my son to cutting a little onion without pain or weakness.
Never take a day of just being able to do even the simplest of things for granted xxxx
[email redacted] if anyone wants to keep in touch or are going through the same/similar thing, please do xxx
Some of you may or may not know, in 2015 I was diagnosed with progressive, chronic illness - Relapsing Remitting Multiple Sclerosis. This is where your immune system attacks itself and damages the nerves of your brain and spinal cord.
Over the years, I have tried and failed a number of drugs and seen my illness progress rapidly in terms of physical symptoms and on my MRI scans. Each person who suffers with this does suffer differently; no two people will walk the same path in their symptoms. I have gone from experiencing numbness and altered sensations in body, mottled skin, blurred vision, extreme fatigue, pins and needles and muscle spasms and pains to different parts of my body to not being able to walk, write or use one half of my body.
Some may look and think I don’t ‘look’ sick .. this is because most people will only see me in remission. Where the big symptoms settle down and only the ones that can be hidden remain. The biggest fear with MS is you don’t know how long your relapse will last or if you will ever come out of it. I definitely have never been the same since my first relapse.
I was offered HSCT on the NHS and then found out I had fallen pregnant. They’ve since wanted to trial me on drugs that will only hope to slow down progression but cannot guarantee it.. the drugs which so far haven’t managed to control my MS.
Hematopoietic Stem Cell Transplantation (HSCT) attempts to “reboot” the immune system, which is responsible for damaging the brain and spinal cord in MS. In HSCT for MS, hematopoietic (blood cell-producing) stem cells, which are derived from a person’s own (scientifically referred to as “autologous”) bone marrow or blood, are collected and stored, prior to depleting much of the immune system using chemotherapy. Then the stored hematopoietic stem cells are reintroduced to the body. The new stem cells migrate to the bone marrow and over time reconstitute the immune system.
With having a young baby & relapses becoming more frequent and each MRI since diagnosis showing further decline and newer leisons, I have been offered HSCT privately at London Bridge Hospital. I don’t want to imagine a life where in the next 5-10 years I’m unable to take care of myself or my son so the sooner I can potentially stop the disease progressing any further than it has I will.
It’s fair to say I’ve definitely learnt that people don’t really know much about an illness until they’re linked to it directly. I for one was completely in that boat. Until I was diagnosed with a chronic illness I had no idea what MS was, how it would change my little world or what it could do. My first learnings made me worry about ending up in a wheelchair before I had even lived or one day waking up paralysed or blind because of it and so on.
The cost of this procedure from collecting my stem cells, chemotherapy, reintroducing my stem cells and hospital stay in isolation for 4-6 weeks is £68,000. Myself and my family have already pulled together over half of the cost and I’m hoping to raise any funds to contribute to this. I will continue myself to raise further funds to better my health for my family and I’m hopeful that you wonderful people could do the same.
Now I wake up grateful for the days when I can feel my legs or walk without having to hold onto someone or even be able to write, where I can control my body enough to drive myself where I need, and be able to do the simplest of things like feeling strong enough to hold my son to cutting a little onion without pain or weakness.
Never take a day of just being able to do even the simplest of things for granted xxxx
[email redacted] if anyone wants to keep in touch or are going through the same/similar thing, please do xxx
Organizer
Reema Sandhu
Organizer