Sam’s trip for HSCT

Thank you so much for stopping by to look at my page. I really appreciate it.

So, my autoimmune story…

I was active, healthy, happy, and had lovely

husband and two little girls. I had a great career as a hairstylist and loved my life.

In 2010 I lost my vision in one eye. I became weak and felt like I was loosing control of my body. Every day things became difficult but life still felt pretty normal.

When my daughter was a year old I was diagnosed with Relapsing Remitting Multiple Sclerosis - an autoimmune disease causing your immune system to mistakenly attack the healthy nerve fibres in the brain and spinal chord.

I had many relapses. Walking started becoming difficult. I started having trouble with stairs. I thought everything would be ok. My relapses were becoming more aggressive and lasting months. Walking long distances became really difficult, even with a cane. I was falling often and there have been times I’ve hurt myself quite badly.

I started trying new things. I saw the physiotherapist under the care of the neurological rehabilitation team at the hospital. Changed my diet, exercised and meditation. I even tried acupuncture. Nothing seemed to help.

Family life with my husband raising children was busy and I carried on as normal for as long as I could.

I tried everything. I wanted to get better so badly for my family more than anything.

My body was slowly giving up. I had to give up my career as a hairdresser, also had to give up driving for 12 months. In 2016 I had a stem cell transplant (HSCT) in hope to halt disease progression with some degree of success. My husband disappeared when things got too hard and since, over the last 5 years I’ve deteriorated. My friends and family have not left my side, thank goodness.

My neurologist has confirmed that I now have Secondary Progressive MS, a type of MS that will progressively get worse with no relapses or any repair to the damaged nerve fibres. Up until very recently there have been no treatments for this type of MS. There is a new drug that I’m on the NHS waiting list for. It might reduce the progression rate by up to 15% which isn’t enough considering I’ve still got many years to live and I’m not ready to give up the fight yet!

I do have a bigger plan. There is a treatment available in Russia with a success rate of up to 76%. It’s very similar to the treatment I had in 2016 although the Russian haematologist uses a different protocol, different drugs and the chemotherapy is given directly into the spinal chord.

The treatment simplified - the chemotherapy will kill off the immune system and memory of MS and then be rebooted with healthy stem cells taken from my own bone marrow.

It is a risky and potentially dangerous procedure but I really don’t have many options. If there’s even a small chance that my disease progression can be stopped I’m willing to take the risk.

For me to get to Russia for this treatment I will need to raise £45,000. So here goes!!

Thank you so much for visiting my page and reading this far. ❤️