There are two clinical trials I know of running at the
moment for treatment for RP. JCyte and ReNeuron, the latter being at stage I/IIa.
Which is to evaluate the safety, tolerability and preliminary efficacy of
sub-retinally transplanted HRPCS patients with advanced Retinitis Pigmentosa.
JCyte are working to create effective treatments for RP,
through revolutionary cell-based therapies which don’t require surgery. I think
they are onto phase 2b.
I was listening to a lecture the other day and I wondered if
I was the last person to know this, so if you go for one of the trials out
there where it involves gene therapy, you can’t ever go for another one…. OK so
when I read this back in my head it’s quite obvious why, but I had not thought
about this before. I guess if they mess with your genes then it can only be
done once. So, people with vision, why would they do this? They may, get some
sight back, but more than likely they will just not deteriorate! I guess that
is what my Mum did with me when I was a child. She was told if I kept having my
treatment in Russia, I wouldn’t lose my sight. But if anything came out later
down the track, I would still be able to go for that. Where as these people won’t.
but perhaps they are just glad to never go blind and they are satisfied with
the sight they have. Though I used to hate the limited vision I had, I would do
anything now to get that back as I do wonder if I am getting too old in reality
to patiently wait for treatment to come my way?
Everything is down to not enough money. Then when they find
treatment, they charge so much that no one will be able to afford it. These are
people’s lives. This is real pain. Real hell for some.
A footballer today was on our news he will be playing
football for an English team and earning £400,000
Per week.
That is absolutely disgusting. No one needs that amount of
money.
I really hope something happens fast and safely. And I hope
it will be not only for those who still have sight but for people like myself
too who are totally blind. But if an angel came down now and said that she
could grant one wish. I had to choose. One would be to give sight to those who
are about to lose it, the other to give sight to those who are blind, I think I
would have to say give it to those who still have a little vision because my
absolute nightmare was when I was going blind, I lived in fear. When I went blind,
I lived in hell but now after twenty years, life is never the same will never
be right, but I’m not scared any more. I mean, if I lived on my own, then I think
my words would be different. But as long as I have my Husband and Son, then I can
cope. If not for them I know I would be alone and terror once again would fill
my life. but I do know people who do live on their own and they too cope. What choice
do they have? I just know it would scare me. But as it is now, I’m not as
afraid as I was when I thought there was a tiny, as I believed chance, that I would
or could go blind. And as I said when I did wake up on that horrific morning, I
died inside. I visited the fires and felt the stabbing of evil pain. But now as
it is, I sing with the angels each day and feel love and peace and I have to
have some hope that one day, the sun will shine for me again and this time I will
be able to see it.
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