Looking at my Facebook, anyone would see the pictures and think I have an almost perfect life - a job teaching Maths and Chemistry which I actually enjoy and has meaning, and a beautiful girlfriend whom I love and who loves to do the same things I do.
But…. Nothing at all is what it seems...
You often hear that people will only share what they want you to see on social media and they share nothing about their personal challenges or difficulties. My case is no different. Since early 2016, I have held onto a secret.
It started in February.
Pins and needles is something that pretty much all of you reading this will have suffered – sit for too long in the “wrong” position and you’ll have that all too familiar buzzing sensation which disappears after a few minutes of swearing and awkwardly limping around the room trying to shake life back into the offending limb. I started to get pins and needles in my fingers, for absolutely no reason, and these would not go away – instead, over the next week the feeling spread, like a fire slowly burning along my body - first my hand, then my arms, next my chest, until my whole left side of my body was tingling all the time. Other things, which every normal person would take for granted were not working correctly anymore. Going to the toilet was suddenly something that needed some thinking about. Even when showering, on reaching up to put the shampoo onto my hair, my left hand flopped uncontrollably onto my wet hair like a dead fish. Clearly something wasn’t quite right!
Tests after tests, and visits to various doctors could not provide an answer, and some doctors even thought it was all in my imagination. After a couple of months of different tests, various doctors and medications I finally had an MRI scan performed on my neck. I read the radiographer’s report to the doctor and under “Impression” I saw the phrase: “Differential diagnosis is multiple sclerosis, ADEM or vasculitis.” My heart plummeted on reading those words – multiple sclerosis – I knew what this was, I had seen people suffer from this before, and the other two diseases mentioned are not much better. Another MRI, this time of the brain, showed similar findings. Finally a lumbar puncture confirmed my worst fear -
Multiple Sclerosis (MS).
The bottom fell out of my world! I refused to believe it could even be possible, I suddenly became an expert radiographer; looking at the scans repeatedly and thinking, “No… they got this wrong.” I was fit, healthy, eating right, and had begun to feel happier with life – I felt I was in the best shape I had been in my life – this couldn’t be right, this couldn’t be happening to ME!! What had I done to deserve this?!
For those of you who may not be aware of what MS is, it is a cruel, progressive disease where your body decides to attack its own nervous tissue. It is a disease that usually strikes young adults. It is a disease that no one can predict what will happen, and when.
At the moment (luckily?!) I have the most common form of MS, called Relapsing-Remitting Multiple Sclerosis (RRMS). This means that I have an attack (a relapse) which may last from days to months, followed by a partial recovery over the next few months (remittance). This pattern continues over time, but the damage accumulates. I’ve had some issues which have thankfully remitted but others which have not. All of my symptoms I have so far managed to hide as I was ashamed to have the label of being ill or “sub-normal”, or worse that people would not believe me because I looked so “normal”. As usual for sufferers, I may have been only diagnosed this year, but have probably had the disease for some time, because the initial symptoms can easily be attributed to other things.
I may appear “normal” from the outside, but I am struggling to deal with a number of issues – I have recurring numbness and pins/needles in my arms, some bodily functions are more akin to that of a 65 years old, than a (healthy) 39 year old, and I have some issues with memory and anhedonia (loss of ability to feel normal emotions). I feel trapped inside of a body that is slowly collapsing around me – like a building with crumbling foundations – and it is becoming a mental battle of attrition.
This might not sound like much, but imagine what it is like to go to bed at night wondering if tomorrow you might wake up, open your eyes but not be able to see, or that your legs no longer respond. These fears are in no way imagined – an early common symptom of MS is something called optic neuritis where the nerves in the eye are affected and the person suddenly loses sight. Some of the MS sufferers in the community have had few visible symptoms for years, then suddenly one relapse and they are literally wheelchair bound. The course of the disease is that unpredictable. Nothing is the same anymore and the life I knew and thought I would have had has gone.
HSCT
However, there is hope. Most of the treatments for MS are aimed at either relieving symptoms or trying to reduce the number of attacks, but in both cases they are disease modifying – the disease can be delayed but will still progress eventually. They are also expensive – around $1000 - $1500 per month, and come with a host of side-effects, some severe since they keep you in a permanent state of being immunocompromised.
There is a treatment which has been used for a number of years, and pioneered by Dr. Burt from the NorthWestern University in Chicago, USA. I have included links to some of the papers on this treatment. It is the only treatment which has been shown to halt MS in its tracks, and in many cases even reverse some of the damage (the lame have literally walked again after this procedure). There is no guarantee about the reversing of damage, but to stop progression and accumulating more disability is the main goal.
The procedure is called Haematopoietic Stem Cell Therapy (HSCT).
To be honest this makes it sound exceedingly newagey and hightech, but this procedure has been used in a similar way for many many years to treat blood cancers. It is very similar to a bone marrow transplant procedure but not quite as potent.
The regime: The patient is given drugs to prompt their bone marrow to release its stem cells into the blood stream - these stem cells are harvested from the patient and kept in safe storage. The patient is then given moderately high doses of chemotherapy and antibodies with the aim to kill off all of the white blood cells circulating in the body (some of these white blood cells will be the "memory" cells which remember that the myelin sheath is a target). Once the white blood cells are destroyed, the stem cells (the sample collected earlier....) are replaced back into the person's body to aid recovery.
The bone marrow itself is largely unaffected, so this makes it safer than that used for blood cancers and means the number of people who have died through this treatment is less than 1%. This isn't to say it is not an extreme and challenging treatment - it is, but a future with MS is far worse and HSCT is definitely worth the risk. There are some treatments which offer stem cells only, but these will not work without killing off the existing bad cells. The chemotherapy is the key. Obliterating the white cell’s memory is crucial, the stem cell replacement is a supportive icing on the cake.
New Dehli Hospital, India.
There are a few places across the world that offer this treatment for Autoimmune diseases and have an affiliation with the Northwestern University. I have been offered a place at the newly built facility in New Dehli, India. The world-class facility is clean and modern with well-trained staff. My appointment is scheduled for the 1st July 2017. Spaces fill up fast since there are many patients that want this treatment and not enough locations to cope with the demand, and currently all of the slots available for 2017 have gone.
Aside from side effects the other downside of the treatment is of course cost, and this is the reason why I have started this fundraising page. The cost of the treatment is $30,000. The NHS is sadly not an option since they only offer this treatment in 2 facilities and then only for people who have failed at least 2 other medications - i.e. those who have waited for longer and accumulated further damage. Since the disease attacks and destroys healthy tissue, it is important to act fast and get treatment as soon as possible after diagnosis in order to save as much of the nervous tissue as possible.
Of all the facilities offering this treatment it is one of the cheapest, but cost was not the only factor in my decision to want to head to India. The protocol used by the New Dehli hospital is identical to that pioneered by the research team at Chicago – including down to the use of ATG antibodies. Some of the other sites use other methods including rituximab (a drug which targets t-cells), but they often need to give this for months after the treatment. The treatment in India is sufficiently strong to kill off everything at once, and not need follow up treatment later. The cost of $30,000 covers the hospital expenses, which is everything from once I step foot in India to when I am about to leave (the flights are not included).
Please help me to grab this opportunity to get this treatment. It would mean so much to me for any donations that I receive, or fundraising efforts on my behalf. At the moment, I feel overwhelmed and the future feels lost; this treatment is my only hope to regain my life back.
Links and references:
HSCT and improvement in neurological disabilities
HSCT association with improvement in neurological disability
HSCT to treat Multiple Sclerosis
HSCT to treat Multiple Sclerosis
HSCT in India:
HSCT in India
Dr. Burt’s profile at the Northwestern University
Dr. Burt's profile at Northwestern University
But…. Nothing at all is what it seems...
You often hear that people will only share what they want you to see on social media and they share nothing about their personal challenges or difficulties. My case is no different. Since early 2016, I have held onto a secret.
It started in February.
Pins and needles is something that pretty much all of you reading this will have suffered – sit for too long in the “wrong” position and you’ll have that all too familiar buzzing sensation which disappears after a few minutes of swearing and awkwardly limping around the room trying to shake life back into the offending limb. I started to get pins and needles in my fingers, for absolutely no reason, and these would not go away – instead, over the next week the feeling spread, like a fire slowly burning along my body - first my hand, then my arms, next my chest, until my whole left side of my body was tingling all the time. Other things, which every normal person would take for granted were not working correctly anymore. Going to the toilet was suddenly something that needed some thinking about. Even when showering, on reaching up to put the shampoo onto my hair, my left hand flopped uncontrollably onto my wet hair like a dead fish. Clearly something wasn’t quite right!
Tests after tests, and visits to various doctors could not provide an answer, and some doctors even thought it was all in my imagination. After a couple of months of different tests, various doctors and medications I finally had an MRI scan performed on my neck. I read the radiographer’s report to the doctor and under “Impression” I saw the phrase: “Differential diagnosis is multiple sclerosis, ADEM or vasculitis.” My heart plummeted on reading those words – multiple sclerosis – I knew what this was, I had seen people suffer from this before, and the other two diseases mentioned are not much better. Another MRI, this time of the brain, showed similar findings. Finally a lumbar puncture confirmed my worst fear -
Multiple Sclerosis (MS).
The bottom fell out of my world! I refused to believe it could even be possible, I suddenly became an expert radiographer; looking at the scans repeatedly and thinking, “No… they got this wrong.” I was fit, healthy, eating right, and had begun to feel happier with life – I felt I was in the best shape I had been in my life – this couldn’t be right, this couldn’t be happening to ME!! What had I done to deserve this?!
For those of you who may not be aware of what MS is, it is a cruel, progressive disease where your body decides to attack its own nervous tissue. It is a disease that usually strikes young adults. It is a disease that no one can predict what will happen, and when.
At the moment (luckily?!) I have the most common form of MS, called Relapsing-Remitting Multiple Sclerosis (RRMS). This means that I have an attack (a relapse) which may last from days to months, followed by a partial recovery over the next few months (remittance). This pattern continues over time, but the damage accumulates. I’ve had some issues which have thankfully remitted but others which have not. All of my symptoms I have so far managed to hide as I was ashamed to have the label of being ill or “sub-normal”, or worse that people would not believe me because I looked so “normal”. As usual for sufferers, I may have been only diagnosed this year, but have probably had the disease for some time, because the initial symptoms can easily be attributed to other things.
I may appear “normal” from the outside, but I am struggling to deal with a number of issues – I have recurring numbness and pins/needles in my arms, some bodily functions are more akin to that of a 65 years old, than a (healthy) 39 year old, and I have some issues with memory and anhedonia (loss of ability to feel normal emotions). I feel trapped inside of a body that is slowly collapsing around me – like a building with crumbling foundations – and it is becoming a mental battle of attrition.
This might not sound like much, but imagine what it is like to go to bed at night wondering if tomorrow you might wake up, open your eyes but not be able to see, or that your legs no longer respond. These fears are in no way imagined – an early common symptom of MS is something called optic neuritis where the nerves in the eye are affected and the person suddenly loses sight. Some of the MS sufferers in the community have had few visible symptoms for years, then suddenly one relapse and they are literally wheelchair bound. The course of the disease is that unpredictable. Nothing is the same anymore and the life I knew and thought I would have had has gone.
HSCT
However, there is hope. Most of the treatments for MS are aimed at either relieving symptoms or trying to reduce the number of attacks, but in both cases they are disease modifying – the disease can be delayed but will still progress eventually. They are also expensive – around $1000 - $1500 per month, and come with a host of side-effects, some severe since they keep you in a permanent state of being immunocompromised.
There is a treatment which has been used for a number of years, and pioneered by Dr. Burt from the NorthWestern University in Chicago, USA. I have included links to some of the papers on this treatment. It is the only treatment which has been shown to halt MS in its tracks, and in many cases even reverse some of the damage (the lame have literally walked again after this procedure). There is no guarantee about the reversing of damage, but to stop progression and accumulating more disability is the main goal.
The procedure is called Haematopoietic Stem Cell Therapy (HSCT).
To be honest this makes it sound exceedingly newagey and hightech, but this procedure has been used in a similar way for many many years to treat blood cancers. It is very similar to a bone marrow transplant procedure but not quite as potent.
The regime: The patient is given drugs to prompt their bone marrow to release its stem cells into the blood stream - these stem cells are harvested from the patient and kept in safe storage. The patient is then given moderately high doses of chemotherapy and antibodies with the aim to kill off all of the white blood cells circulating in the body (some of these white blood cells will be the "memory" cells which remember that the myelin sheath is a target). Once the white blood cells are destroyed, the stem cells (the sample collected earlier....) are replaced back into the person's body to aid recovery.
The bone marrow itself is largely unaffected, so this makes it safer than that used for blood cancers and means the number of people who have died through this treatment is less than 1%. This isn't to say it is not an extreme and challenging treatment - it is, but a future with MS is far worse and HSCT is definitely worth the risk. There are some treatments which offer stem cells only, but these will not work without killing off the existing bad cells. The chemotherapy is the key. Obliterating the white cell’s memory is crucial, the stem cell replacement is a supportive icing on the cake.
New Dehli Hospital, India.
There are a few places across the world that offer this treatment for Autoimmune diseases and have an affiliation with the Northwestern University. I have been offered a place at the newly built facility in New Dehli, India. The world-class facility is clean and modern with well-trained staff. My appointment is scheduled for the 1st July 2017. Spaces fill up fast since there are many patients that want this treatment and not enough locations to cope with the demand, and currently all of the slots available for 2017 have gone.
Aside from side effects the other downside of the treatment is of course cost, and this is the reason why I have started this fundraising page. The cost of the treatment is $30,000. The NHS is sadly not an option since they only offer this treatment in 2 facilities and then only for people who have failed at least 2 other medications - i.e. those who have waited for longer and accumulated further damage. Since the disease attacks and destroys healthy tissue, it is important to act fast and get treatment as soon as possible after diagnosis in order to save as much of the nervous tissue as possible.
Of all the facilities offering this treatment it is one of the cheapest, but cost was not the only factor in my decision to want to head to India. The protocol used by the New Dehli hospital is identical to that pioneered by the research team at Chicago – including down to the use of ATG antibodies. Some of the other sites use other methods including rituximab (a drug which targets t-cells), but they often need to give this for months after the treatment. The treatment in India is sufficiently strong to kill off everything at once, and not need follow up treatment later. The cost of $30,000 covers the hospital expenses, which is everything from once I step foot in India to when I am about to leave (the flights are not included).
Please help me to grab this opportunity to get this treatment. It would mean so much to me for any donations that I receive, or fundraising efforts on my behalf. At the moment, I feel overwhelmed and the future feels lost; this treatment is my only hope to regain my life back.
Links and references:
HSCT and improvement in neurological disabilities
HSCT association with improvement in neurological disability
HSCT to treat Multiple Sclerosis
HSCT to treat Multiple Sclerosis
HSCT in India:
HSCT in India
Dr. Burt’s profile at the Northwestern University
Dr. Burt's profile at Northwestern University
Organizer
Stephen Sharpe
Organizer