Headlines to help vision are as follows.
Patients cured of
cataract using stem cells. Stem cells are the way to go. For cancer, heart
problems and other conditions and diseases. Lenses were made from stem cells in
this incidence.
I think France could win the race for a cure for blindness
linked with RP. It’s a guess though, but I do wonder if treatment in America
will prove to be too expensive. As for England, we were way ahead because for
years we received donations from very kind American people but sadly when
America gave the green card to research more into things like stem cells,
everyone then turned their attentions to the US, of course they would, they
live there, but, we were so far ahead I do wonder if we would have found a cure
or at least treatment by now if donations had continued?
It’s very sad but it’s all about money.
China has come from nowhere to the front of the line,
because they show less interest in my opinion of making sure treatment is safe.
Sometimes I do wonder how much do we fuss with regards safety? And I always
wonder why we have to start on poor animals for research and not directly to
the people as in people who don’t deserve to live a full life I’m talking
serious murderers. Controversial? Yes, but what punishment do they get other
than some years in jail? I’m talking in England where we don’t have the death penalty
or life meaning life… Life in our country isn’t life. Sometimes it’s well under
twenty years.
Many slow years are spent researching on innocent animals
starting small then larger animals. Eventually onto humans, but that can take
so long. Waisted years.
A headline from France
French Biotech starts trials to restore sight in (ALL) types
of Retinitis Pigmentosa.
Yes, all… For those who are unaware, the eye disease I have
is called Retinitis Pigmentosa and there are so many types of RP.
All types of RP effect the retina. RP causes the retinal to
stop working, and eventually die. RP is inherited. Caused by a fault in the genetics
passed
down to you from a parent. This doesn’t mean your parent has to have RP, the
gene is just carried. Ten generations can be skipped before it shows its ugly
head again.
Symptoms of RP difficulty in seeing in a dark room or
outside in dull sky’s and night time. For me I couldn’t see anything but shadow
and street lights when I had sight. During the day, if I stood still, I could
see perfectly well. So, clearly. Tiny print too. But put me in that dark room,
even a room with poor light, and I was lost. In poor light I could see things
like my hand in front of me or a person, but detailed features, forget it. And I
couldn’t read unless the lighting was really good or natural daylight. Colours
were very vibrant not a bother seeing them. But come the dark, it was hell for
me. An yet now I’m blind, I walk outside in the dark without any trouble, isn’t
that odd? How for so many years I struggled and now there is no option, I’m OK.
Other signs of RP, is loss of peripheral vision which means
if you look straight ahead you can see but may miss what’s at your side, above,
and ground level.
There are a few cases where by those with RP only can see
around the sides quite the opposite to only seeing from the centre of your
eyes. Those of you who have this kind of RP I’m told it’s rare. So, you have no
vision straight ahead, your eyes only see around the edges.
Some other headlines with regards to treatment and research
for RP and hope for sight are as follows.
jCyte reports results for phase 1-2
a clinical trial for retinal/cell treatment.
28 people were given the treatment and 22 of them had their
second eye treated. Reports said they could see colours so much better, reading
was clearer and colours they could see without difficulty. Even reports claimed
that some people could see stars now.
Spark therapeutics ‘vision restoring RPE 65 gene, now, don’t
ask me what that is and I don’t even know if that is the type of RP I have, but
more news on them, we hear about most weeks.
An injection has been
given to a patient at the back of the eye.
A 29-year-old patient from Britain, is the first person to be treated
with this virus.
There is loads to read on the link below.
I also heard that as a new parent to be, you can receive IVF
to have the RP gene removed so your baby won’t be affected by this disease.
That in itself is a breakthrough. Though I’m sure isn’t pleasant. But better
than you having a baby with poor vision leading to possible no sight at all.
This link is amazing.
What will I be writing about in six months? Moreover, six
years? I pray to God in six years, I will not be using my wonderful tech and
software which enables me to be able to use a computer.
I hope I’m writing about a holiday I have been able to go on
with my Husband. I hope I can tell you what my Grand baby looks like. I hope I can
write stories about my plans to take my new born Grandchild places and tell you
all about my Son’s wedding day.
I hope I’m writing about the inky sky, the silver stars, the
amazing clouds, even a rainbow, I mean, what on earth does a rainbow look like?
Even when I had what I regarded as good clear sight, I never saw enough to see
a rainbow.
The spring lambs leaping in the countryside of England’s
finest farmlands and to be able to see fish jumping from the rivers as the
ripples chase them.
Butterflies, wow, I have only seen pictures of them as for
birds? I saw a budgie when I was four and since then never. They didn’t stay
still long enough for me to focus.
Driving? Now that will be a story. Getting in the driver’s
seat? Wow, gosh, freedom at last from chains which prohibit me from daily life.
just every day things that sighted people take for granted. To be able to open
a letter without tech. now, don’t get me wrong, thank goodness for technology. Even
a few years ago we didn’t have half what we have now. Thanks to the iPhone,
life for us is very testing but possible. It takes a while, but once things are
pressed and time has been taken, we can read parts of letters that come through
our letterbox. Again, using an app called Tap Tap See, we can read what food we
have pulled from the freezer, fridge and can cupboard. But oh, boy, it takes
the patients of a saint.
Thank goodness for the iPhone and all the apps. But to
receive that it costs us a fortune as well as the software to be able to read
my lap top and type. I can touch type thankfully, all I need now is to know how
to be able to read what I’m writing and I can do that thanks to software called
Jaws at the cost of about £750 on top of my lap top costs and it doesn’t last
forever. Every few years we need to change the software to keep up to date with
the latest goings on.
To get by each day I think my Husband and I spend about
£3000 per year, $4,281 more than we would if we could see.
I hope to be writing about going for job interviews and even
better, getting a job. I also hope not to be with those awful raised lines we
find on our skin after we have burned ourselves on the oven shelves like I did
today.
I did an hour and a bit today of ironing, without burning
myself which isn’t unheard of, as I would say I burned myself on average about
once every few months. But, when I first went blind, oh, gosh, more like every
week.
To be able to check dates on food, wow, that would be great.
But what I do have is the best Husband I could ever wish for. I love him
forever and a day and I know he feels the same. For that I am grateful. And I will
be grateful if only treatment for my eye disease would hurry up…
We have to have hope. Without it, we have existence with
regards our lack of sight.
Thank you to all
those who are donating to help research into Retinitis Pigmentosa. Your kindness
is our future.
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