Posted in How I'm Adapting

Falling Down 2

Well. I’ve managed to do it again.

In the daylight this time.

In the middle of my home city.

Whilst I was on the floor, trying to retrieve my beloved headphones and thankfully resting on my rucksack that took most of the brunt of the fall, 2 people passed by and didn’t say a word.

Not a ‘Are you ok’ ‘Do you want a hand?’

I brushed the dirt off my leg. Winced as my thumb started to throb.

Ah well I thought.  I’m sort of getting used to this now and realise a cane is nearer for me than I thought.

It would alert me to obstacles and these little unseen dangers for me.

Depth perception isn’t good at all.

As I was laid on the ground, I THEN saw the little kerb I didn’t see from above.

Resigned to the fact this will happen unless I sort out how to receive cane training and should just give up pretending I can see alot better than I can.

I did try to think positively in the moment though.

Maybe I don’t look old, not enough to panic people into thinking I could be breaking a hip anytime soon.

Always a silver lining.

PICTURE DESCRIPTION Picture of brown haired cartoon girl walking then falling over kerb and laying on the floor crying
Posted in Research for a cure or treatment for us

Alkeus pharmaceutical Clinical Trial for Stargardt’s Disease

Hope for Treatment with Alkeus Pharmaceutical.

The trial is using oral therapy, once a day, Gildeuretinol.

Stargardt disease is caused by the changes in a gene called ABCA4, which influences the way the body used vitamin A, resulting in damage to the retina which leads to progressive vision loss as our peepers cannot process the  disposing of waste  vitamin A correctly.

There has been promising results so far halting progression of early stage  Stargardt’s Disease.

3 teenagers treated with the drug during the 2 to 6 years of treatment, saw no deterioration of the disease.

This suggests that without treatment  they would have experienced sight loss within 2 years, similar to the siblings with the same identical condition experienced.

“We’ve been able to demonstrate the very important effectiveness in late stage – we can’t bring the vision back, the vision damage is permanent, but we can preserve some of the last retina that is still alive,” CEO Leonide Saad told Reuters.

Click here to read about the clinical trial

Posted in No category yet

Football is for everyone interview.

So following on from my recent post about Micheal and James Owens impending Stargardt Disease  documentary, ‘Football is for everyone’

Here’s an interview with them both at Talk Sport.

Really interesting to me as someone having this condition to hear it spoken about this way.

Good on them both for speaking about this rare genetic eye condition and bringing this to a bigger platform and raising the awareness we need ☺

Please click on the link below to view the interview on YouTube.

Link to hear the interview on YouTube