Carlas' MS Road to Russia

Hello everyone, my name is Carla Boggs - Brennan from Sligo now living in Dundalk.

 

I was diagnosed with Relapsing Remitting MS in Sligo General in April 2001, aged 24. When you are that young, sure I thought I was invincible and I didn't really think about it much, I felt I was in a good place - I injected the medication I was told to inject, I did the exercise I was told to do and trusted the medics and the drugs to do right by me.

Now, 20 years on, married with 2 little girls 7 and 10 years old, I’m not in that good place anymore.

 

Having trialed numerous ' Wonder Drugs' over the years e.g., Fampyra, Mitoxantrone (which resulted in putting me on a walking stick), each and every one has failed me.

In 2016, I became aware of HSCT (Hematopoietic Stem Cell Transplant) through a Panorama documentary on BBC, where nearly wheelchair bound people just like me were back participating in their family life again, working and contributing to society.

 

Having researched HSCT, I found it has been used to treat Leukaemia for the last 30 years. It is a long way past the experimental stage, and although it is used to treat cancer patients, it is rarely used to treat MS in the mainstream - and it works!

 

Stem cells (baby cells that don't 'know' yet that they have MS) are taken from the bone marrow, frozen, full chemotherapy over 4 days and then the stem cells are reintroduced to form a brand-new immune system over the course of a year. It is guaranteed to halt progression (over 94% success) with a 74-76% chance that it may reverse some existing symptoms e.g., for me - walking, balance problems, massive fatigue, coordination, vertigo, muscle spasms, swallowing problems, speaking problems, anything controlled by muscles… the list goes on. So, I'm a betting woman and I'll take those odds.

 

I attended my neurologist in March, he told me I was at the end of the road medication-wise, just keep doing what I'm doing and basically, hope for the best??! When I asked for a HSCT referral to the UK, I was told “Oh no, you might die"! However, after research the mortality rate for this is less than 1 %, about the same as adults getting their tonsils out...

 

Although HSCT can be undertaken in the UK, the criteria is extremely rigid and I will be trialing drugs for the next 2 years beforehand, even if I am accepted. Time is not on my side to wait that long. The leading provider is a dedicated MS hospital in Moscow, Pirogov National Medical Centre, they have done this procedure on over 2000 patients to date from all over the world and are so busy. I have been given a date of April 18, 2022.  If I can, I would take a cancellation and go earlier.  The cost of this treatment alone is €45000 so my target here is €35000.

 

I just can't allow myself to look back in 10 years’ time, when it's too late and my health has declined further, and wish that I had taken that chance when I could have, and that time must be now to give me a fighting chance with my family …

 

I would really appreciate any help you could give me, even to share this story far and wide, I hope it strikes a chord with someone. Thank you for taking the time to read my story and I wish you all the best.

 

 

Carla