Help Hannah fight MS

For those of you that don’t know, In February last year 2020 I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). The day I was told, my life as I knew it had come to an end. Being a fitness fanatic, holding a highly stressful job it came as a complete shock and something I continue to try and get my head around.

The disease Multiple Sclerosis has no cure and is a lifelong condition that affects the nerves, spinal cord, and the brain. This happens when my own body’s immune system mistakenly attacks a healthy part of my body – in this case it damages and destroys the fatty substance that coats and protects my nerve fibres called the Myelin Sheath.

When the Myelin Sheath is being damaged by my faulty immune system this is where a relapse occurs, basically meaning anything from loss of vision, loss of mobility, loss of balance, loss of sensation and many, many more devastating outcomes. Once the Myelin Sheath has been damaged so many times that my body cannot repair itself, it then becomes a permanent disabling disease. It is progressive and as much as I try not to think about it, who knows where I will be in 10 years time.

The diagnosis came as a truly devastating shock and Neil and my world has been turned upside down. We have made many positive steps for living with this, including moving to Pembrokeshire, Wales from our highly stressful life in Hampshire. I have been adapting my fitness regime, keen to keep going and ensure the muscles are as strong as possible without having to rely on my shady messages from the brain! That being said, I am increasing feeling worse, the fatigue and cognitive issues are really mentally taking its toll and I feel having thought about this treatment for a while, I should take the next step. We have been non-stop researching all treatments of which there are a number however all come with some serious side effects.

We have found a treatment called Haematopoietic Stem Cell Transplantation (HSCT). This treatment is the only one of its kind out there and the only one that’s aim is to halt the disease in its tracks. This is an intense chemotherapy treatment (four chemotherapy infusions) aimed to stop the damage that MS causes by completely wiping out and regrowing my immune system using stem cells from my bone marrow. This treatment is 28 days long.

There are other treatments available out there but HSCT is the only one designed for halting the progression of the disease whereas ALL the other treatments are designed to slow the disease down which does not stop the inevitable. My current one Ocrevus, is one of these treatments that although my neurologists say is working, it doesn’t promise to do that forever and feel like I need to try and halt before more damage is done and potentially end up in a wheelchair amongst other awful things.

I do not qualify for HSCT on the NHS as I was informed by my Neurologist that I must be seen failing the other delaying treatments before I could get this on the NHS – my view is that why would I possibly wait to worsen the disease and potentially end up with a permanent disability and run the risk of being put into a wheelchair that cannot be reversed!!

I am looking to pay privately for this treatment at Clinica Ruiz which is in Mexico or at the clinic in Russia. All I want is to live and enjoy a healthy life without worrying that my next relapse will rob me of my vision so that I’ll never be able to see or that this horrific disease will rob me of my ability to walk around the beautiful Pembrokeshire coast, with my step sons, Ralph the Cockerpoo and husband Neil.

The treatment alone is at a cost of £80,000 in the UK or $54,500.00 in Mexico and Russia. This does not cover our travel. This does not cover our private medical care when back into the UK which will result in bloodwork being taken and interpreted by the Haematologist to ensure my body is recovering from the harsh treatment as it should.

We are trying to raise funds to help relieve some financial burden that we are about to face.

We have done hours and hours of research through every possible avenue, like speaking to professional Neurologists, through webinars with Professors who have spent the majority of their career being devoted to MS & HSCT and through speaking to many people who have had this treatment. Please don’t think we have came to this decision lightly and although it will be a horrific 4 weeks of treatment; I am willing to go through it all knowing that it gives me the best chance to stop this disease from taking my freedom away.

Thank you so much if you’ve read this far and we honestly appreciate any donation possible to help us fight this disease head on!!