Category: The Medical Stuff

Posted in The Medical Stuff

Stargardt Rare Disease

Posted on by One Vision

Stargardt Macular Dystrophy or Stargardt Disease is a Congenital and Genetic eye disease. The most common of the Macula Dystrophies and Inherited Retinal Diseases.

Having said that, It is thought that approximately only 1 in 8000 to 10,000 adults and children have Stargardt disease.

This is a rare disease.

I have a diagnosis of Macular Dystrophy. I’ve had no genetic testing as yet. This, being the most common, is suspected to become the likeliest form I have.

My son will be a carrier of the disease at the very least, as I have no ‘Healthy’ eye genes to give him from my side, So he will automatically get a mutated gene from me.

He seems OK though at the moment. He will be more likely to have no problems in the future, than the other option he has of having a macula condition.

Posted in Research for a cure or treatment for us, The Medical Stuff

Research is at Risk, due to the Pandemic

Posted on by One Vision

Charities incomes have been hit hard by the pandemic and could set life-saving research progress back decades.

Many Charities that I have particularly highlighted on my blog, rely on funds and donations to help find treatment or a cured for Genetic / Hereditary eye conditions.

Read more about the meeting with the UK Health Secretary Matt Hancock by clicking on the link below.

Click here to goto The Macular Society Article

Posted in The Medical Stuff

Will I go Blind Blind?

Posted on by One Vision
woman facing front cross legged in a colourful water bubble wearing a hope t-shirt

I’ve had a few questions from people with Stargardts and the general diagnosis of Macular Dystrophy.

Will I go Blind Blind?
It’s very very rare with someone within the spectrum of the macular dystrophies group to go totally blind. There is the legally blind status at it’s worst, but not blind blind… No.
Unless there is some added complication. Another condition, causing problems beside it.
This is from the horses mouth. My consultant.
Best thing to do is speak to your consultant about this.
As the central vision is affected. The peripheral vision is still usable. It will be a learning process to use that more and get the very best use out of it. I will write about low vision help in another post later.
I’m already partially using my peripheral vision. Not consciously. I can tell when I look above stuff (especially in the dark) to see it.
These are the quotes that people are concerned about and now so am I … ‘losing my sight’, ‘I’m going blind’, ‘when I lose my vision’.
Unless I’m subsequently miss-diagnosed, and my tests results show something different or an added eye condition. I won’t use the word blind.
Not because I’m ashamed. Because that isn’t the truth.
I am losing my central vision.
Not, MY vision.
I also avoid using these terms…
I won’t call it a disease = Condition
I won’t say deteriorate = Progression
Most of all, I don’t want a newly diagnosed person, coming across a website, vlog or an Fb page thinking they will go completely blind.
We’ve all done it. Endlessly searched Google for information about our eye conditions. As I’ve stated before. It’s a rare condition. There isn’t much information out there.
So, put the right information out there. I don’t beat about the bush with this blog. It will always be an honest, true account of dealing with this condition and what it brings. If there is something happy or sad, I will post it up.
It’s about the hopeful, funny days, and the downright frustrating, ranty days.
Don’t get me wrong. This will, and has, caused me and others the most devastating loss and sadness. It won’t be easy. The central vision, that helps you look at fine detail, to read, drive, see pictures, faces, colours and shapes, will be gone.
As long as I have any hope of using my peripheral vision, I will live in that hope bubble all day long.