Some of you might recall me ending up in hospital twice in September last year with severe inflammation in my brain which was causing constant pain, loss of vision and some other scary stuff. After lots of tests for brain haemorrhages, tumors and stokes the final diagnosis was Multiple Sclerosis which isn't life threatening but is seriously disabling.
I have lost the feeling I'm my left arm ( im left handed) in both my legs and the lower half of the trunk of my body. I now only have sensation in my right arm, and from my boobs upward on my upper body and it's still getting worse.
My neurologist wants me to have a treatment called Lemtrada which was approved in August last year for use in the UK which will effectively destroy every white blood cell in my body and kill my immune system stone dead after a year my immune system will have recovered enough that the MS will try to cause damage again so I will need a top up but that should be it for a few years, my Central Nervous System will have time to repair the damage done to the Myelin sheath that surrounds my nerve endings in my brain and spine and it will mean that for a few more years I will avoid the need for wheelchairs etc.
The problem is in the last couple of weeks we have found that Southampton hospital and a lot of other specialist centres are refusing to treat us because they have not trained their staff to administer such a dangerous drug ...... This is bullshit, they have administered the drug in their oncology units for 20 years under the name Campath as. Leukaemia treatment in 12 times higher doses. We could be treated but they won't
One of the others waiting like me for treatment and getting worse every day has started an online petition to try and get some pressure put on the hospitals to pull their fingers out and start treating us with a more effective a proved medication that at £56,000 for 8 infusions over 2 years is ONE QUARTER of the cost of Tysibri which costs the tax payer £100,000 per year per patient for monthly treatments that would need to be administered for the rest of our lives.
If you would find it in your hearts to share this please anywhere you can to help us get more support and social media awareness I and all tthe others who desperately need this treatment before the damage is too severe and disabling would truely appreciate your support.
The e-petition is here http://epetitions.direct.gov.uk/petitions/74987
Please sign, share and help us get the treatment that could give us back our lives, our mobility and independence
Thank you
Tracy xxx
