Posted in Any Questions?

Questions I’ve received #4

Posted on by One Vision

Questions I’ve received so far from my website, fb and Instagram.

So last time I did this I took the strange, odd, plain weirdos out and didn’t post them.

It doesn’t bother me… I’m still going to answer them. So remember people. If you want me to answer a really odd question. I will! Haha!

Back then, I was trying to be a sensible, professional type blog, but then thought I just have to be more like me.

This time, here you go. This is what happens…

🟢 Jane – Who’s your favourite sister?

Me – You sis obvs.

🟢 Anonymous – You have a very good sense of humour! Are you really so positive? I find it very hard sometimes.

Me – So do I Anonymous! In my opinion though, and this is just my own. I cannot be worrying about stuff that’s out of my control. That’s not my own choice. If decisions are taken out of my hands, I will give up until there is some hope or I hear differently. Then I’ll fight. I can only put it out there for a miracle!

🟢 Anonymous – Would you rather be blind or deaf?

Me – Pardon? 😉

🟢 Micheal – What’s your accuity now please?

Me – Last measured (end of 2019) (20/60) Left eye, (20/80) Right eye. Both corrected with glasses whilst reading the chart. Will update the blog when I have more results.

🟢 Andrew – Can people with Stargardt get guide dogs?

Me – Yes. Like any person with visual impairments. If you fit the criteria and think it would help. Yes, you can apply.

🟢 Rav – Did your toenails fall off due to your charity walk?

Me – No. Feet completely fine. My hips though…

🟢 Anonymous – Will you marry me?

Me – At least ask me out for a drink first 😉

🟢 Weirdo – Do us no we can cure md lady? Etc, etc, link, etc…

Me – No you can’t. Horrible how these people hunt you out to try to extort money from you. There’s no cure or treatment. As yet!

🟢 Angry Person – If your blind how cn you make people? C*** (I’ve censored this)

Me – First of all, It’s you’re. Secondly, I’m not blind. Never said I was. Thirdly, Not a clue what you are on about 🤔 Please learn to spell and use grammar.

🟢 Another weirdo – Were you live👌🍆

Me – Planet Earth.

🟢 Angry Person #2 Haaaa ur blind

Me – Which charm school did you fail from fella? Please read my blog properly. You may educate yourself.

Update…

Thank you for a few messages I’ve just got after posting this.

No. I’m not going to ‘out’ their names or aliases. That isn’t my style at all. I actually wish them well. These people are probably hurting somewhere down the line ✌️

Let’s concentrate on the positive ☺

Posted in Map Stats

What a wonderful World – Thank you! ❤️ #2

Posted on by One Vision

These are all the countries my website has had visits from so far. Updated.

24!

14 more countries added since my first post about my map Stats.

Bear with me… I’m abit of a geek.

And since this blogs conception on the 30th August 2019 with my first blog post on this website.

Spreading awareness even further across the world ☺

In descending order :-

United Kingdom, United States, Norway, Canada, Singapore, Ireland, Sweden, Greece, Ecuador, India, France, Denmark, Jersey, Australia, Spain, Turkey, Albania, China, Hong Kong, South Africa, Portugal, Egypt, Nepal, Italy.

I didn’t ever think it would spread so far and wide. It’s interesting to see where people have read this from.

Thank you to everyone that has messaged, liked, followed, signed up on the website through WordPress and given me support over the time I’ve been wittering on about this. I do notice and appreciate every one of you. It has been lovely hearing your stories too. ❤️

PICTURE DESCRIPTION
List of countries from screenshots of my stat pages on the website that have visited as explained in the post above.
Posted in Research for a cure or treatment for us

Stars in our eyes

Posted on by One Vision
PICTURE DESCRIPTION Picture of myself facing front. Red long hair and green eyes. A close up.

This is what Macular Dystrophy looks like.

My eyes have flaws in them with a genetic condition, but look totally healthy don’t they?

They haven’t altered. Don’t look strange. You cannot tell at all.

So you are looking at a pair of eyes that were made from a faulty eye gene passed from my mother and my father when I was made, during conception.

This is why it is rare. They had to each have the faulty gene… Carriers… (along with one that would have been healthy as, as far as I know, they didn’t have this condition) to pass on to me.

So I got both copies that were a mutant gene.

Luck of the draw. Like everything in life. I didn’t realise this until some decades later.

I have no healthy eyeball genes to pass to my son. So he will nailed on have a mutant, faulty gene from me. Which at the very least makes him a carrier for Macular Dystrophy.

If his father has passed on a healthy one he stays a carrier. If it’s mutant. He’s the same as me.

This is how it transfers from person to person.

This is why research is vital.

And there is positive news ☺

I’ve always said there is hope!

Anything is possible in life. We never know what’s around the corner 🙏 💜

Stargardt research. Potential therapy on the horizon for inherited retinal disease.

Prof. Carel Hoyng, A professor of ophthalmology from Radboud University, The Netherlands, is involved with ongoing gene therapy trials in Stargardt disease.

Research is going into being able to repair the RNA mutations, with the next step being that they will go into clinical Phase 1/2, probably in about a year. At the moment the stage they are at is in talk studies. The next phase after that is to go to in-patients.

An RNA therapy is designed to correct the mistake, or mutation, in the RNA of someone with a genetic disease. By correcting the mistake, the RNA can then be used to create the protein that the cell needs, taking away the underlying cause of the disease.

Ribonucleic acid (abbreviated RNA) is a nucleic acid present in all living cells that has structural similarities to DNA.

If everyone can keep their fingers crossed please that would be smashing🤞🏻

Link for video and more information.