Please Help Amber Crush MS with HSCT

Hi! My name is Amber and... I could really do with your help.

 

See, just over a month ago, I woke up with blurred/double vision. Though highly disconcerting, I initially just chalked it up to eyestrain from spending three days stressing over a uni essay that was due. However, being the over-cautious person that I am, I went to an optician to check them over and £30 later, he said the same thing.  I decided it was nothing to worry about, I just needed just rest my eyes for a few days. But a week goes by and my eyesight was still bad. And then one morning I wake up to find that my left eye had shifted upwards by 2 mm and that my left eyelid started to droop as if I'd stroke in my sleep.  Understandably, these developments scared the living daylights out of me. I spent the next 10 hours in A&E where they eventually gave me a CT scan of my brain and I was told there definitely was something on my scans. Over the three weeks, I underwent more CT scans, a few ultrasounds, so many blood tests and then an MRI of my brain and eyes. 
They told me I had a few enhanced lesions on my brain, that my optic nerve and the surface of my brain that was connected to it were inflamed. They also told me that there was evidence that this had not been my first relapse because I have scarring on the top part of my spine. The diagnosis was Multiple Sclerosis, an autoimmune condition that slowly debilitates you because your immune system mistakenly but systematically attacks the nerve fibres your brain and spine use to relay messages and control your body.

 

As it stands, no medicines can cure MS and the standard approach to treating it is through immunosuppressants. Essentially, they try to reduce the number of relapses as much as possible and then try and speed up the recovery when they do. There is, however, a procedure that can completely stop Multiple Sclerosis in its tracks, and that procedure is HSCT.

 

HSCT stands from Haematopoietic Stem Cell Transplantation and the long and short of it is, it's a procedure that reboots your immune system by wiping out the malfunctioning one and using your own stem cells to grow a new one! Moreover, alongside preventing new relapses (attacks) from occurring, this procedure can also reduce or elliminate lingering symptoms leftover from past relapses because your immune system actually stops attacking your brain and spine.  I think you might understand why this is considered a godsend procedure to someone with MS. But the one thing that HSCT cannot do is repair the nerve fibres that are already irreparably damaged, because nerve cells do not renew themselves. This is why it is so important to get the HSCT procedure done as early as possible after diagnosis; more time means more relapses and more relapses mean more permanent damage and potential debilitation. 

 

Unfortunately, my problem is that I am not eligible to get this treatment on the NHS because HSCT is severely limited to MS sufferers who are already more debilitated (aggressive relapses) and who have tried at least other two lower-risk medicines. In essence, the resources for HSCT were already limited because it is only conducted in 2 hospitals in the UK (London and Sheffield), but also the NHS is struggling with the backlog that the Covid pandemic created and just general funding problems. Or to put it bluntly, they have a strict budget, limited places and I am not debilitated yet. But before I continue, I should stress that I am a massive supporter of the NHS; my mother is part of it and so was my brother during lockdown;  I know how hard they work. Case in point, they went above and beyond to diagnose my sudden vision change, but I think that Covid-19 has also put it into damage-control and money-saving mode that will most likely last for years. The NHS, and most EU countries it seems, just don't have the resources to offer the best treatments to everyone at the moment; they can only damage control treatments, not potential cure treatments.  

But this is my one shot, and time is the enemy, so I am asking you to please help me out just this once.

 

Thank you very much for your time.

 

Amber V