LET'S ALL BE WINNERS?

 Good day Bloggets, still on a high from yesterday. It was a lovely day and evening. My Son was the happiest I have seen him for ages. What made it lovely yesterday evening was the fact that his friends came by to congratulate him. Hugs all round. He sat in his little man cave of his car for some hours. Playing his new stereo. His friends sat in with him. He did some cosmetic work on his car. Using the top tech when it comes to car tools.

A fishing wire and my blooming hairdryer.

 

Don’t ask.

 

It’s sunny and warm today. My dogs are playing I don’t know how teen can sleep through this. LC has a busy couple of days this week, so Hub left her here to be a pet before the storm.

 

I had the best sleep since I can remember last night, totally with happy thoughts and relief. For the first time I can remember I went to sleep within half an hour of my head touching the pillow.

 

I normally wake up every hour but only twice last night. Or through the night I should say.

 

 You should see the state of my windowsill with my canary. Really, he is a messy little tweet.

 

Still waiting for my gardener to turn up. He came last Friday to look at the job, was very nice, I liked him, got a good feeling about him and his partner in crime. I wonder if he is looking for my window cleaner and perhaps they will car share. As the last time my window cleaner came was January. My brother yesterday reminded me how dirty they were. Well, I told him he must have a cataract. But seriously, I think a bucket is required out there but then the builders are creating dust so not sure it would look any better. I say it, as in one window, as there is not a chance Fifi Blogget is climbing ladders to the upstairs windows. As for the back, keep family and friends in the front room. That’s my motto. Hahaha.

 

My Mum used to tell a story of her Mother in law. She had as most people did in those days, lino on the floors, opposed to carpets. Whenever anyone came to visit the luxury of the rugs came out, they were rolled up at all times other than when people came to the house.  I should do that with my rug or should I say dog bed. Really, they love it and the hairs on it are dreadful as getting them out with my little hennery vacuum is difficult. We have a great vacuum upstairs for the carpets, but it’s a monster and I can’t carry that down every day.

 

It’s funny you know, they say it’s your brain that sees, well, if so, why can’t my brain tell me I can see? I oftern wake up thinking I can see then my mind tells me otherwise. Then I get annoyed as I think why did I remember I can’t see, why don’t I just train myself to believe I can?  But it’s more complex than that.

   

 Retinitis pigmentosa is an inherited condition which involves both eyes. If it starts in one eye, the other eye usually develops the same condition in a number of years. Most cases are familial, inherited in a variety of ways, including dominant, recessive, and sex-linked recessive. Some cases are sporadic and lack a family history of the disease. A thorough genetic pedigree, often with the aid of a genetic counsellor, is essential in determining risk of future generations acquiring the disease.

Retinitis pigmentosa is usually diagnosed during the teenage years but may be present at birth. The latter congenital type is usually fairly stable and no progressive. Cases that are diagnosed later in life are often milder and may progress more slowly. Sadly mine was from birth. The eye condition is associated with at least 32 different genes, which control traits that are passed along in a number of different ways. At times, the genetic trait is dominant and likely to be passed along to a child when a parent has RP. At other times, the trait for retinitis pigmentosa is recessive and may be present for many generations before it appears in a family member. This means that, even if your mother and father don't have retinitis pigmentosa, you can still have the eye disease when at least one parent carries an altered gene associated with the trait. In fact, about 1 percent of the population can be considered carriers of genetic tendencies for retinitis pigmentosa. So for your grandchildren, your own children, and even you, as I know of people who were in their forties fifties and even slightly older who were not aware they had RP until their late diagnoses. It’s all about funding. There are organisations in the UK and all over the world who would be grateful for donations.

   

If you have sight but have been diagnosed with RP, then you must seek advice for receiving vitamin A, as Vitamin A, is the fuel to our engine of sight. Funny thing is, when I used to go to Russia for eye treatment, in the seventies, eighties and early nineties, I was given huge doses of Vitamin A directly injected into the eye. Our Doctors in the UK really were against it, saying what good is that? Well, now, most countries including the US advocate it but you must get advice as you need a liver check as too much vitamin A, can be bad for your liver.

 

It’s inspiring to learn of the medical research for eye conditions. To recount the numerous vision treatments and cures a decade ago, it was all doom and gloom regards to vision saving treatments and cures. A decade ago, it was studies on blind mice. There were virtually no studies done on humans. Clinical trials seamed allusive! Today, more than a dozen promising therapies are being evaluated.  .

 

It’s just not quick enough for me. When you consider it took 18 years to find the first retinal disease gene, and another 18 years to launch first gene therapy clinical trial, progress today is remarkable.

UCI Stem cell pioneer poised to launch clinical trial for RP.

QLT’s drug for RP and LCA improves vision in eleven patients.

A drug restores vision in retina without functional photoreceptors that was great news a year ago. And the amazing thing is, the drug only worked on retina’s that were not healthy. So much more in the news for our future, let’s hope that the future is closer than we have ever even dared to dream about? In the meanwhile, let’s look after our ganglion cells rods and cones.

 

I hope this blog leads onto stories diaries and more from a sighted blogger, rather than a blind one. To see is to be free. You only know what you have missed out on if you lose something valuable. I have lost enough in my lifetime. And hope now my life can move on and for those who have suffered, please let there be help soon? It’s down to money as always. I just wish all the top scientists would get together and work as one. Forget the race and let’s all, be winners?