Due to Covid 19, my treatment has been postponed until it is safe(safer!)to wipe my immune system. My health isn't good, but at least I'm safe. In the last year I managed to raise just shy of £50k thanks to the amazing support I have had from friends, family and strangers. A big thank you again to all who helped me to get to Mexico for my HSCT, I couldn't not have been in a position to go without you. I cannot see my rebooking until January at the earliest, but I will keep you informed on Facebook.
Reboot Cath with HSTC
Help me fight to stop Progression of my Multiple Sclerosis
I'm Cath from Warwick and mother of 3 young children. I have multiple sclerosis and I am fighting it all the way by wanting HSCT to reboot me. This is a harsh treatment that involves having my stem cells harvested, then chemotherapy to kill off my faulty immune system followed by my stem cells being reintroduced to my body.
This game changing treatment is currently the only way to halt the progression of MS and that's what I want to do - what I need to do - to stop the downhill spiral of my condition. MS is causing me lots of problems, not least a lot of pain and exhaustion on a daily basis meaning that I cant join in with a lot of family activities, I have to plan everything in advance to ensure I get enough rest. Having a hidden condition makes things even harder for me.
Despite having this web page/twitter account/justgiving page/facebook page, I am normally private about my condition but my need for a future without pain and a bleak future as I decline in health, beats my need for privacy.
Decades Night at The Nelson Club , Warwick on Friday 24th January 2020
Gill's Bespoke Vinyl Show
DECADES NIGHT RAFFLE
Raffle is being drawn on Fri 24th Jan at Decades Night .
Tickets are £2 a strip or £5 for 3 strips
Instructions: 1: Pay via paypal (firstname.lastname@example.org) 2: Choose Send to Friends and Family 3: Put your name, mobile number and how may strips you want (your personal details will not be shared and only used to contact winners)
Prizes include a 2 course meal for 2 with wine at The Star and Garter, Leamington Spa, 4 x Jump In Vouchers plus slushies, a beauty treatment voucher, a round of golf for 4 (worth up to £200 depending on when you book it for), family ticket to Planet Ice in Coventry including skate hire, a bungee jump, Cow Shed travel set, tobogganing for 2 at the Snowdome, bottle of gin, Emma Bridgewater mug, Go Go Makers holiday voucher, board game, chocs, wine, calendar, pink fizz and much more
My story has been covered by the Warwick Courier several times - see below for the articles
Suggestions always welcome.......
Can you help with fresh ideas to help me reach my goal? Do you want to volunteer? Do you have any skills that you can share ? Do you like organising events? Are you a people person? Do you have some ideas but you're not sure if you have any time to spare?
If you have any ideas for fundraisers that I can organise, or perhaps you want to get involved, please feel free to contact me on the form below, message me on my Reboot Cath With HSCT Facebook page, or email me at email@example.com.
I have 3 people who are my fundraising commitee and we are always looking for more helpers, organisers, brainstormers, ideas people, bakers, organisers, and marketeers.
Please message me, this is a big mountain to climb and I can't do it alone
What is HSCT and why do I need it?
The fight for a better future
Prior to the year 1997, I was just living a normal life in London and working in Telecoms in a demanding role. I started to feel dizzy on a daily basis, and this got increasingly difficult to cope with and resulted very quickly in me not being able to walk without falling into things and being housebound.
My unexplained symptoms got worse. I was living with painful muscle spasms, I temporarily lost the sight in one eye, relentless fatigue, and cognitive confusion (cog fog). I was diagnosed with MS in 2000.
Multiple Sclerosis (MS) is a ‘hidden’ disability – the worst kind.
People can’t see the difficulties and pain that MS sufferers have to cope with, and therefore have trouble understanding the difficulties we face. I now cant work due to chronic fatigue, pain in my limbs and the dreaded cog fog. I wish I could do more, hopefully after this transplant I can go back to work. My husband is wonderful, juggling a full-time job, keeping the house in order, and with our 3 young children, life is busy .
There is currently no cure for MS, but there are options. A life of DMD’s (Disease-Modifying drugs) with side effects worse than the symptoms they are supposed to alleviate.
Or how about something that has more positive results, something that is real and not just a chemical nightmare keeping the profits of big pharmaceutical company ticking over nicely?
HSCT - (Autologous) Haematopoietic Stem Cell Transplant
HSCT involves harvesting a supply of the patient’s own stem cells, separated off from their blood using a similar process to kidney dialysis. These are then stored whilst the patient is treated with chemotherapy to remove their existing faulty immune system (mature white blood cells). The stem cells are then re-introduced and allowed to develop into new, working white blood cells – in effect, a brand new immune system – A REBOOT!
It is important to state that this is not a cure for MS – I will probably still have the damage done already to deal with. But, so far all reports, both medical & anecdotal, show that it stops MS from progressing and in some cases stops some or all of the symptoms. 70%of MS patients who have HSCT report a stopping to their symptoms.
There are down sides to the treatment – chemo is very hard on the body and mind, and recovery to a fully fit immune system takes many months or even years. The upside is that, so far, all those who have received HSCT have survived to report results varying from ‘fair improvement’ to ‘fantastic’ and ‘miraculous'.
The primary benefit that many neurologists overlook in these outcomes is ‘Quality Of Life Improvement‘. This is where HSCT really shines through. The fatigues and the fogs generally lift or vanish, giving the treated a huge, even life-saving boost to their well-being & the ability to cope with the pain and disability MS has given them.
HSCT is not currently available as a standard NHS treatment, and it is only possible to get the treatment as part of a medical study, or with entry requirements that only the most extreme sufferers can pass. It’s ironic because it would cost the NHS £30,000 for each treatment and no further drugs are required, whereas the average annual cost of current medication is £40,000 per patient.
The rest of the money being raised is for travel to Clinica Ruiz in Puebla, Mexico, medication that I need to pay for on my return, hiring a carer for 12 hours a day whilst having treatment (who will cook and clean for me and help me during the period of neutropenia straight after chemotherapy), a MRI before treatment, a cleaner for our house at home, as it must be as prisitne as possible while my immune system regrows, childcare as necessary, and the list goes on
I am not alone. There are thousands of MS sufferers trying to raise money for treatment abroad. I need to raise money for my treatment. If any money is left I will use it to have the therapies that are available right now but I don't have access to such as hyperbaric oxygen therapy - thats if I still need it! I would also help others and really push to help awareness that your money doesn’t have to line the pockets of the drug companies who don’t want to cure us, but can actually provide positive treatment that will give people with MS the chance to have their lives back.
Problems with balance and co-ordination, because the brain regions that organise these skills are affected by nerve damage
a kind of exhaustion which is out of all proportion to the task undertaken
Persistent nerve pain, muscle spasms, MS hug (feeling of being squashed around the lungs) extreme stiffness
A hidden condition
This includes forgetfulness, finding it hard to focus or concentrate, or a general sense of being too tired to think
Symptoms get worse with extremes of heat or cold. This is due to the speed that nerve impulses get transmitted through the body, making any existing symptoms worsen
This may be partly due to stress about having a long term condition like MS, but it might also be caused directly by damage in the brain.