What is Stargardt's Disease? In simple terms, in the early part of an individual's life, (usually before the age of 20), their central vision steadily decreases until they are legally blind.
Chrissy was kind enough to answer a few (of my many-to-come) questions and let me stick them on my blog. I hope to help raise awareness about Stargardt's through this post and my book. Be awesome and give it a share, readers!
1. In my book, the main character is going to be roughly
16 years old and has just been diagnosed with Stargardt’s. In your case, what
age were you diagnosed?
I was diagnosed at 23 in my last year at uni. I think being 16 would be really
difficult as it’s already a difficult time for a teenager. My main concern was
having to change my life plan and I think this would be relevant for a teen
too. There’s also the social aspect as it’s hard to tell people because they
have never heard of it and just don’t understand at all!
2. Before you were diagnosed, did you wear glasses or
have any vision trouble?
No I had perfect vision. I never owned glasses. I had check-ups sporadically
and nothing was ever found.
3. If you can remember, what was your vision like when
you were first diagnosed with Stargardt’s?
It was
around 6/15 in one eye and 6/12 in the other. I had my driver’s licence and was
still driving though the legal limit here is 6/12. I had noticed that I couldn’t read the board
at uni and even sitting up closer I was still having trouble. I also noticed
that at night my vision was worse and when I was driving all the lights from
cars, traffic lights etc would blend together and make it hard for me to figure
out what was going on. I noticed that was reading I wasn’t looking directly at
the words, I’d look slightly above (because of the blind spot). I’d actually
thought I’d lazily trained myself to read wrong! The other thing was sometimes
people noticed when I was looking at
them talking I wasn’t actually looking at their eyes I was looking above at
their forehead.
4. What is your vision level now?
I’m now legally blind at 6/60. It took about three years to get to that level. I
read with magnification and large print. I don’t read long documents anymore I
use audio a lot. If I’m having conversations with people I can’t usually see
their face but I look directly at them because I don’t want to look weird
looking at them with my peripheral. When I walk down the street it’s like I’m
walking into a tunnel of nothingness. I can see in my peripheral but don’t know
what’s coming probably about 15 steps ahead.
5. Are there any support groups for people with
Stargardt’s? Or any therapists or online forums? I’d love to know of some that
I can put in my book (and direct others to).
There’s your local vision organisations eg we have Vision Australia and Guide
Dogs. Support groups are usually through Facebook. I think some areas in the US
have local support groups, I know The Foundation Fighting Blindness has a New
York based support group. But really there’s not many of us so in smaller
citties/towns it would more likely be a general ‘vision impaired’ support group
rather than Stargardt’s specifically.
6. What sorts of “helpers” do you use to read things
online as well as books?
I’m audiobook obsessed. I used Audible as I find they have the most content and
they have an app you can have on your phone that saves where you are, can speed
up/down the audio, buy the books straight on there. There’s also software
called Jaws that is a screenreader for the computer. I don’t use this I only
use Zoomtext for reading short webpages. I also used software called Kurzweil
3000 (the people that make pianos) for long documents and uni work. I load the
file into the software and it will read it to me and highlighting where I’m at.
I only got it this year so still learning all its functionality.
7. Are there any terms I should avoid while writing out
of respect? I don’t want to offend anyone.
I’ll look into this more. I have come across people being offended by ‘vision
impaired’. I don’t have a problem with it at all. Legally blind is fine too. I
tend to use either of the two on my blog and have never had anybody say
anything.
8. Anything else you’d like to add would be great. I’m
looking for as much information as possible!
This is amazing, guys. There's so much more I want to learn. If you too are interested and want to spread the word, make sure you look at Chrissy's website. She has her own story as well as interviews with others and tons of information about the scientific community's research progress.
A few more links of Chrissy's--make sure to like and follow:
Thank you, Chrissy, for taking the time to do this interview. I'm sure I'll have tons more questions for you!!
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