Help Tiff get HSCT to halt her MS

For those who know me, know it’s extremely rare for me to ask for help - in fact, I’m usually the person who’s offering or wanting to help others. However, this is possibly the one time in my life where I need every bit of help I can get. 

Please read my story and help in anyway you can - big or small, it will help me get the treatment I need to halt this invisible disease - Multiple Sclerosis.

Life with Multiple Sclerosis

For anyone who isn’t aware, I have MS. To be exact, I have Relapsing Remitting Multiple Sclerosis (RRMS).

I was diagnosed in March 2013, a little before I turned 26. It turned our lives upside down. The past eight years have been spent battling with relapses of Optic Neuritis, back spasms that have left me lying flat for weeks, reoccurring UTIs which have landed me in hospital, and a severe relapse in 2016, that left me unable to walk or stand for two weeks – this relapse is one I didn’t fully recover from.

I deal with daily symptoms of pain, fatigue, numbness, weakness, bladder issues, balance and vision problems, horrible sensations like bugs crawling on my skin, and electric shocks down my spine. I struggle with anxiety and constant worries for my future with a progressive disease.

The last two years have been particularly hard with a further decrease in my mobility and on my hard days, the simple things like showering or getting dressed have become a big task that takes planning.

There is no cure

There are treatments available that aim to slow disease progression, but there is no cure.

I have been on daily self-administered injections, countless daily tablets, and now on monthly infusions. Although scientists are optimistic that one day a cure can be found, I am not prepared to sit and wait, in fear of my next relapse, next symptom to show, further disease progression, or mobility decline.

Treatment to halt my disease

I recently applied and was accepted for Hematopoietic Stem Cell Transplantation (HSCT) in both Russia (12+month waiting list) and Mexico (4month waiting list). Unfortunately, HSCT is not yet available in Australia, so I must spend 28days in Mexico under the supervision of well-respected Haematologists and Neurologists.

HSCT works by taking and storing stem cells from my blood, blasting my body with chemo to kill off the immune system, before reinfusing the stem cells to build a new immune system, free from the memory of MS. The aim of wiping out and rebooting my immune system is to halt disease progression and stop any further relapses or attacks.

While this treatment doesn't work for everyone, it is understood to be effective for 80-90% of patients with MS, and the best odds are for those with RRMS and early on in their disease. That's me. HSCT is not without its risks. However, I’ve met with two well-respected Haematologists in Melbourne – who both support this treatment. I’ve also personally spoken to many people who’ve done this treatment and their MS has either been halted, partially, or even fully reversed. I am ready and willing to take those risks - to give myself the chance of better quality of life.

Health is wealth

The odds of this treatment working are in my favour, Hematopoietic Stem Cell Transplantation (HSCT) in Mexico is not cheap. I’ll need $90,000+, to help pay for the treatment, outpatient accommodation (including tests, medication, and food), and return flights. I need to hire a 24/7 carer to assist me with anything I need during the 28+ days of treatment – the carer is organised by the hospital and usually Registered Nurses who’ve been through this many times and will provide me the best support.

My Sister-in-law has kindly offered to fly over to meet me midway through treatment for extra support and to help me during the journey back home to Australia.

Adrian and I have always said we'd do anything and everything within our power, if it meant we could cure my MS. HSCT is the closest thing we've got to a cure and we’re prepared to give it everything we’ve got. Health is wealth – this is especially important to us since we had Ayla (3yo daughter).

Thank you for reading my story and for your support, it means the world.

Tiff xx