Posted in Research for a cure or treatment for us

A possible breakthrough?

WOW! This is amazing news for us all with genetic sight loss conditions and it looks hopeful.

Told you I was going to get away with it!

Now, let me not get ahead of myself.

That’s if I’ve actually got Stargardts Disease. I was just diagnosed with Macular Dystrophy which Stargardts is within that spectrum and the likely possibility as it is the most common form.

Must ask about genetic testing when I eventually see that consultant I’m still waiting to see for all my results. Which will be obsolete now.

The drug, known as LBS-008, is an orally administered tablet and has been trialled in patients over a 12-month period, as part of a phase two clinical study by US-based pharmaceutical company, Belite Bio.

It is hoped the tablet, which is now in phase three trials, will halt or slow the progression of Stargardt, one of the most common forms of inherited macular disease, which there is currently no treatment for.

Hopefully, if this works it may unlock the key to curing or treating the many other forms of Macular Dystrophy.

Read more below in the Macular Societys Facebook link.

Macular Society facebook page to read more.

Or, click link below for the original article.

Click here to read on Macular Society website

❤️ 🙏

Posted in Articles about my blog

Rare Disease UK Article

I have written an article for Rare Disease UK. Depicting my life with Macular Dystrophy.

The link is below if you care to take a look.

Link to the article

Posted in Low Vision Clinic

Low vision assessment

PICTURE DESCRIPTION
Woman with red hair looks into a magnifying glass

Hi all.

Got my appointment with the low vision specialist at Bayfields opticians on 6th of July.

This is from a referral from my local sight aid charity.

Will be going to look at sunglasses and lots of magnifiers to see what suits me best. We will see. Or not see, as the point in going here is just that 🤭

Will update you all to explain what goes on here for anyone else waiting to go and is not sure what happens there.

First time I will have been anyway. So we can learn together.