Help change Lauren's life with HSCT
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My life with MS so far……..
My name is Lauren Dickie and I am a married, 34 year old working mother of a 5 year old daughter Charlotte.
I was diagnosed with Multiple Sclerosis 14 years ago; this came as quite a shock as I was only 21 and just starting out my new life as an adult and on my fledgling career. There is no way to tell how the disease will progress to affect you, meaning an uncertain future. Luckily, my boyfriend at the time, Jonathan (now my husband) and my family were very supportive and helped me through the challenges I had to face.
My condition was quite stable for the next 8 years, with me having acute periods of relapse in the first few years such as waking up blind in one eye and unable to walk, to severe dizziness which caused constant sickness for days, to name a couple, followed by complete remission. It’s not been easy. As the years passed, these relapses stopped due to treatment available for Relapsing Remitting MS called Interferon Beta 1A and I was told that my MS was likely to take a benign path and I guessed I was one of the lucky few to have no symptoms. I now have a beautiful, happy daughter, who is the light of my life, but following her birth in 2010, I noticed slight difficulties in walking and waved goodbye to my last pair of heels.
Over the last two years my mobility has gone downhill steeply and I now have balance issues causing me to have to use an elbow crutch for balance and support due to fatigable weakness in my legs. I also wear ankle supports to stop my ankles giving way under me, this is along with unbearable fatigue and innumerable other symptoms I have to overcome daily. I have difficulties in walking minimal distances now and overcoming the mental challenge of accepting my new status as a ‘disabled person’ has been a bitter pill to swallow.
This does not sound all too rosy a picture, it has caused my world to shrink as my mobility lessens and I have difficulty taking part in more and more activities, for those who know me well, you will know what a hard task it is for me to be on the periphery of any activity or event, but throughout this my husband has been my rock and my daughter my bright light and we have a very happy life.
I am still working hard (through sheer force of will the majority of the time) in a job that I love but at the moment, the future is very uncertain as I am not on any treatment to halt progression of the disease. Catching a cold with MS is so debilitating because my immune system is already so badly compromised that it sets me back days or weeks at a time.
My medium to long term outlook is not encouraging without this extraordinary new treatment and I will likely face further deterioration in my condition and capacity for everyday activities with my family.
M.S. is a neurological condition that triggers the immune system to attack the nerves in the brain and spinal cord (the central nervous system). Sclerosis' means scarring or hardening of tiny patches of tissue around the nerves, destroying the capability to transmit the electrical signals. 'Multiple' is added because this happens at more than one place in the brain and/or spinal cord. The damage to nerves seems to be due to the immune system mistakenly attacking the nerve coating which is made of a fatty protein called myelin. It is an autoimmune disease so my body is basically killing off my nervous system.
I have had various treatments, the most effective of which was the Interferon injections, which I had to stop taking at the time I decided to have a baby. I restarted treatment following her birth, but came off it after it became apparent that I may be suffering from Secondary Progressive, for which there is currently no approved treatment.
Panorama (BBC 1) recently ran an episode titled "Can you stop my Multiple Sclerosis?" based on pioneering work being carried out in Sheffield where the programme showed that they certainly can stop M.S.
This is a progressive condition and time is of the essence in finding something that will reverse the condition or at very least, arrest its advance. After 14 years, I feel I am now running out of time and need to take my health and recovery into my own hands. The treatment is ineffective over a certain amount of disease progression and the trials in the UK will not be progressed in time to help my case. This is the best chance of recovery and leading a normal life I have, but I need to face the fact that I may not be accepted on this NHS treatment program and I have made the decision, along with thousands of other MS sufferers, to seek the treatment privately in the UK or Globally.
The treatment, in centres abroad, are further advanced than in the UK, having treated hundreds of patients from all over the world, with all types of MS and have seen remarkable results. The treatment is called Autologous Hematopoietic Stem Cell Therapy (HSCT). It’s very aggressive and uses chemotherapy to kill off my existing immune system and rebuild it using my own stem cells to reboot my immune system to a point before the disease took hold.
The cost of this will be in the region of £56,000 (itemised below) which I hope to fundraise, partially through this fundraising group and partially fund myself.
Note- If I get accepted for the treatment on NHS program, then any money raised on here will be donated to someone else who needs the treatment or donated to the MS Society Charity so all money raised will go to a great cause regardless.
There are currently just over 100,000 people in the U.K. living with M.S, most having been diagnosed in their late teens to late twenties so it’s something that really needs all the support it can get and I do hope you feel you can help me in my efforts to halt the progression and change my life for the better!
Costs
Basic treatment in Mexico- £40000 (approx. due to currency fluctuations)
Flights x3 and VISAS (2xcarers required) - £7000
Care and Physio in the UK- £2000
Scans and medical testing in the UK- £3000
Fundraising costs- 5% of total raised
Total- £56,000
My name is Lauren Dickie and I am a married, 34 year old working mother of a 5 year old daughter Charlotte.
I was diagnosed with Multiple Sclerosis 14 years ago; this came as quite a shock as I was only 21 and just starting out my new life as an adult and on my fledgling career. There is no way to tell how the disease will progress to affect you, meaning an uncertain future. Luckily, my boyfriend at the time, Jonathan (now my husband) and my family were very supportive and helped me through the challenges I had to face.
My condition was quite stable for the next 8 years, with me having acute periods of relapse in the first few years such as waking up blind in one eye and unable to walk, to severe dizziness which caused constant sickness for days, to name a couple, followed by complete remission. It’s not been easy. As the years passed, these relapses stopped due to treatment available for Relapsing Remitting MS called Interferon Beta 1A and I was told that my MS was likely to take a benign path and I guessed I was one of the lucky few to have no symptoms. I now have a beautiful, happy daughter, who is the light of my life, but following her birth in 2010, I noticed slight difficulties in walking and waved goodbye to my last pair of heels.
Over the last two years my mobility has gone downhill steeply and I now have balance issues causing me to have to use an elbow crutch for balance and support due to fatigable weakness in my legs. I also wear ankle supports to stop my ankles giving way under me, this is along with unbearable fatigue and innumerable other symptoms I have to overcome daily. I have difficulties in walking minimal distances now and overcoming the mental challenge of accepting my new status as a ‘disabled person’ has been a bitter pill to swallow.
This does not sound all too rosy a picture, it has caused my world to shrink as my mobility lessens and I have difficulty taking part in more and more activities, for those who know me well, you will know what a hard task it is for me to be on the periphery of any activity or event, but throughout this my husband has been my rock and my daughter my bright light and we have a very happy life.
I am still working hard (through sheer force of will the majority of the time) in a job that I love but at the moment, the future is very uncertain as I am not on any treatment to halt progression of the disease. Catching a cold with MS is so debilitating because my immune system is already so badly compromised that it sets me back days or weeks at a time.
My medium to long term outlook is not encouraging without this extraordinary new treatment and I will likely face further deterioration in my condition and capacity for everyday activities with my family.
M.S. is a neurological condition that triggers the immune system to attack the nerves in the brain and spinal cord (the central nervous system). Sclerosis' means scarring or hardening of tiny patches of tissue around the nerves, destroying the capability to transmit the electrical signals. 'Multiple' is added because this happens at more than one place in the brain and/or spinal cord. The damage to nerves seems to be due to the immune system mistakenly attacking the nerve coating which is made of a fatty protein called myelin. It is an autoimmune disease so my body is basically killing off my nervous system.
I have had various treatments, the most effective of which was the Interferon injections, which I had to stop taking at the time I decided to have a baby. I restarted treatment following her birth, but came off it after it became apparent that I may be suffering from Secondary Progressive, for which there is currently no approved treatment.
Panorama (BBC 1) recently ran an episode titled "Can you stop my Multiple Sclerosis?" based on pioneering work being carried out in Sheffield where the programme showed that they certainly can stop M.S.
This is a progressive condition and time is of the essence in finding something that will reverse the condition or at very least, arrest its advance. After 14 years, I feel I am now running out of time and need to take my health and recovery into my own hands. The treatment is ineffective over a certain amount of disease progression and the trials in the UK will not be progressed in time to help my case. This is the best chance of recovery and leading a normal life I have, but I need to face the fact that I may not be accepted on this NHS treatment program and I have made the decision, along with thousands of other MS sufferers, to seek the treatment privately in the UK or Globally.
The treatment, in centres abroad, are further advanced than in the UK, having treated hundreds of patients from all over the world, with all types of MS and have seen remarkable results. The treatment is called Autologous Hematopoietic Stem Cell Therapy (HSCT). It’s very aggressive and uses chemotherapy to kill off my existing immune system and rebuild it using my own stem cells to reboot my immune system to a point before the disease took hold.
The cost of this will be in the region of £56,000 (itemised below) which I hope to fundraise, partially through this fundraising group and partially fund myself.
Note- If I get accepted for the treatment on NHS program, then any money raised on here will be donated to someone else who needs the treatment or donated to the MS Society Charity so all money raised will go to a great cause regardless.
There are currently just over 100,000 people in the U.K. living with M.S, most having been diagnosed in their late teens to late twenties so it’s something that really needs all the support it can get and I do hope you feel you can help me in my efforts to halt the progression and change my life for the better!
Costs
Basic treatment in Mexico- £40000 (approx. due to currency fluctuations)
Flights x3 and VISAS (2xcarers required) - £7000
Care and Physio in the UK- £2000
Scans and medical testing in the UK- £3000
Fundraising costs- 5% of total raised
Total- £56,000
Organizer
Lauren Dickie
Organizer