HSCT treatment abroad for Multiple Sclerosis

I NEED YOUR HELP TO ACCESS LIFE-CHANGING TREATMENT!

I need to raise £50,000 which will cover the cost of travelling to Moscow in Russia and undergoing the 30 day in-patient HSCT treatment at the Clinic and the drugs I will need to bring back with me to ensure on-going infection control.  

PLEASE DONATE

ABOUT ME


Hello I'm Trish. I'm 38 and have worked for the NHS for 15 years  as a Children's nurse and now as  Health Visitor.  I live in Keighley west Yorkshire with my husband Dan and five children aged 19 to 2.

I received the devastating news of the diagnosis of Primary Progressive Multiple Sclerosis  in June 2019, It has become very aggressive over the last 6 months, making my life increasingly difficult.  I've always been a very active person, taking the kids on days out and going for long walks in the countryside, but MS has stopped me from enjoying the things I once took for granted, and the physical and psychological effects of this are hugely debilitating.

I NEED YOUR HELP TO ACCESS LIFE-CHANGING TREATMENT!

What is MS?

Multiple Sclerosis is a chronic, progressive neurological auto-immune disease, which affects the central nervous system. My own immune system is attacking my brain and the covering (myelin) around the spinal cord and nerves , causing significant disability and in an indeterminate amount of time will progress to the point that I will need to use a wheelchair and will totally lose my independence.

Day to Day life for Trish

In the past six months my MS has progressed at an alarming rate and become very aggressive.  After walking less than 50 metres I lose the ability to walk properly and I’m constantly tripping over and losing my balance, I experience severe fatigue and short-term memory loss.  As a result I have had to reduce my working hours to part-time, work have been supportive and I have had reasonable adjustments made but the next stage will be stopping working .

The only available treatment for my condition is Ocrevus which has a 23% chance of slowing progression. I had to fight hard with the NHS to get this treatment and when I got the funding Covid struck and as a result I will not be getting this treatment. It is recognised that you should start treatment as soon to diagnosis as possible I have had nothing for 16 months which means it has just progressed .

My husband Dan is self employed and we have had to survive on my NHS salary as a result we have not had any money spare to save towards this treatment.

Hard Facts

My last MRI showed an increase in lesions (damage) on my brain and spinal cord, which prove that my MS is highly aggressive and progressing at an alarming rate. I have a rare form of it called Primary Progressive MS which means my body is constantly under attack from my own immune system.  Very little is known about it and it effects less than 10,000 people in the UK  as a result there is very little in the way of research and treatment.

The nature of MS is that further disabilities can happen at any time and would result in disabling me further; this could affect any part of my body or senses depending on where the lesion is. Should I lose my sight or use of my arms or legs I will no longer be able to work or more importantly be the mum I want to be to my children.  New lesions come completely out of the blue, and the next one could potentially result in putting me in a wheelchair. Our finances have already taken a hit following the Corona Virus outbreak, and if I can no longer work, I can't save for the life-changing treatment I need.

YOU CAN HELP ME TO ACCESS LIFE-CHANGING TREATMENT!

HSCT treatment has given me real hope of beating MS for good!

Hematopoietic Stem Cell Transplantation (HSCT) effectively ‘re-boots’ the immune system, essentially 'restoring the factory settings' and halts any further progress of this awful disease, and STOPS MS IN IT'S TRACKS.

It is a ground-breaking treatment, which uses the patient's own harvested stem cells following a high dose of chemotherapy. This may seem drastic, but HSCT treatment has been proven in clinical trials to STOP DISEASE ACTIVITY in over 80% of patients with active, MS, such as myself.  Sadly this treatment is only available to a very select few on the NHS, and is unlikely to become more widelyavailable until further clinical trials have taken place, which will be over the next few years. I do not have years to STOP MS.

MS will severely STOP ME over the next few years from doing all of the things I used to enjoy.

HOW CAN YOU HELP?

HSCT treatment has been available  in Mexico and Russia for some considerable length of time, and the two clinics have become 'centres of excellence' in research and treatment for MS patients with HSCT, with a proven 80% success rate.

I need to raise £50,000 which will cover the cost of travelling to Moscow in Russia and undergoing the 30 day in-patient HSCT treatment at the Clinic and the drugs I will need to bring back with me to ensure on-going infection control. 

I REALLY CANNOT HAVE THIS LIFE-CHANGING TREATMENT WITHOUT YOUR HELP!

This is, without exaggeration, the biggest challenge I have ever faced in my life, and I would welcome the chance to get my life back, and run around with my children, and do all the normal things that I once took for granted. 

All that is left to say is a huge THANK YOU from the bottom of my heart for giving me the chance to get my life back.  Dan , the kids and I are so incredibly grateful to you all.



For additional information on MS please visit the MS society page:
https://www.mssociety.org.uk/about-ms/what-is-ms

If you would like to email me to ask any additional questions please contact my husband:

[email redacted]
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Organizer

Dan Grimshaw 
Organizer
Keighley, Yorkshire and the Humber, United Kingdom
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