PICTURE DESCRIPTION Cartoon depiction of myself with long red hair, holding a. Magnifying glass up to my face
I’ve got 3 magnifiers from the clinic.
The first is a small pocket one that is for looking at price labels, sizes of clothes. Stuff like that when you’re out and about. Just one or two words basically to help you shop easier. Can fit in your bag sometimes you can carry it around with you. This also has a light when you slide it out of the holder.
PICTURE DESCRIPTION Picture of handheld small Eschenbach easyPOCKET magnifier
The second is a stronger one. This is handheld but also has a stand that come with it. You just slide the handle into the holder if you want to use it and it props it up. I can honestly say doing my nails now has been a pleasure rather than a chore. It doesn’t look like I’ve had a 4 year old paint my nails anymore. No more just painting on dark colours over the stuff that was already on cos you can really see the definition between your natural nail colour and your skin beside it.
Also reading cooking instructions or a letter is when this is the most useful I reckon.
When you want to read something with this. You hold the magnifier stable and move the book or paper instead. I’ve got to shut one eye for this to focus though. It also has a light.
PICTURE DESCRIPTION Picture of Eschenbach Mobilux led magnifer in holder
The next is a big screened device. RubyHD You can change the colours of the text and background to whichever ones suits you. Screenshots can also be taken of photos and you can zoom in to see them more clearly.
You move this device down the page of a magazine or whatever you’re trying to read. You can also make the text bigger or smaller by the plus and minus buttons at the side.
PICTURE DESCRIPTION Picture of Ruby HD magnifier
Amazing what’s out there that can help you out. All free as well as long as you agree to send them back if you aren’t using them anymore. Please ask first though if your council provide this for free. I’m lucky I’m somewhere that does. Other places you have to pay. It’s really lovely that this service is available.
Get yourself a comfy chair and a cuppa. If you stick with this epic blog post, you will need it.
Ready? Here we go…
Well. You know that I don’t know anyone in my family that had or has the same condition as myself?
I’ve been investigating.
There must have been someone else with this in my family. It can’t be just me, surely.
The way this thing works, is that there are people within my family, both sides of it down the maternal and paternal line, that must have (present) or have had (past) the following… (This will include everyone blood related to me from cousins to aunties and uncles, grandparents, parents and siblings)
Macular Dystrophy – 2 bad eye genes (Like me)
Carriers – 1 bad, 1 good eye gene (Possibly like my son, as I have no good one to give him. Certainly, my Mother and Father)
Completely fine – 2 good eye genes.
There must have been carriers to get to my point in time. Each passing on a bad gene to make a carrier, passing it down until 2 carriers from separate initial families meet. Maybe even from back in the days of yore.
Stick with me…
So. This is why this is rare. My Dad met my Mum. Each side of their family had the 3 options above within them. Then boom, they met with their faulty eye genes. Unbeknownst to them.
My mum and dad didn’t have this. They were carriers. They will have each received a bad gene from their parents and so and so forth. My sister seems to be OK. She will be ok or a carrier.
Still with me? See what I mean about a comfy chair now?
I found out some information from my maternal uncle. There was an Auntie Ivy of his, (My maternal grandmother’s elder sister) that was known as having very poor eyesight in the 1950s when he was young. She had apparently been like this since he can remember.
Now, back then. Her apparent ‘really thick glasses’ could have just been a way back in the 50s or earlier to help with ‘poor eyesight’ as this condition wasn’t known then at all.
I know what you’re thinking. She could have had just bad eyesight. People do.
So, we had to find out what age she was. How can you though with not much family to ask and not a lot of details?
A lightbulb moment. That’s what!
My mother had a family bible. Which I’ve got now. I remembered that family names were written in the front of it. From my Great Grandmother Clara’s family unit, whom I never met, to my Grandma Doris, my Mums Mother, whom I vaguely remember as she died when I was very young. She evidently looked after me alot. To finally, my own Mother, who wrote our family names, adding to the list, carrying on the tradition.
PICTURE DESCRIPTION Picture of first page of family bible with Ivy’s name and date of birth shown written down.
In this old Bible, which I remember looking at a lot when I was young. I discovered that Ivy was born in 1908. She was 20 when my maternal uncle was born.
The interesting thing about this is. She wasn’t blind. She was a younger age than say for Macular Degeneration, which affects the elderly and isn’t my condition. There wasn’t an injury known to be the cause. A probable possibility.
Remember that my condition affects you from birth, as it’s genetic. It’s the luck of the draw when you start to get your difficulties. Which is when you usually find out you have always had this inside you. An eventual diagnosis due to realising something is wrong and seeking help. From being as early on as a little tot. Or in my case. Late-onset. A lot later on, in my 40s. I’m one of the lucky ones. Luckier than Ivy, whatever circumstance was the case with her, bless her.
Now if you’ve got this far reading this… Firstly (big hug) as I even bamboozled myself while I’m writing this down… And I understand it.
Secondly… You may ask… But what does this mean? It doesn’t change anything?
You’re quite right. It doesn’t. But what it does show me is this…
Having learned and spoke to some of the people who have hereditary eye conditions, most of whom seem to know the people that are affected within their own family for example, a parent, sibling or grandparent etc.
How utterly astonishing it is then, in all those many, many decades, that it’s just me and maybe possibly Ivy, that’s taken one for the team.
Not that my family are anything special or have done anything extraordinary to mainly avoid this condition appearing in more of them joining my gang. Not at all. Complete luck.
I find that fact amazing.
Now I need to delve into my Dads side of the family, I feel. Investigate if there was anyone like me or only carriers.
I sit here today, with none of my blood relations understanding me and my condition.
For that, I truly feel extremely grateful and through my own diagnosis, we now know that this must have existed and does exist within us collectively as a family, I realise even more so, how bloody lucky we really all seemed to have been ♥
They could at least club together and buy me a nice birthday present though… Or a pint. 😉
One Vision Blog 