IamA lady living with Stargardt's AMA!

Hey,

I got a question for you.

Is it hard to perform everyday tasks? Can your family help in any way?

Is there any treatment you get?

Yes it's tricky depending on what the task is. I have to lean in to turn on the stove for example, I use an app on my iPhone to zoom when I need to see labels and read regular print. I can't see street signs or labels so I look got cues t cross or I ask for hep while shopping.
My family and friends do help read things out to me sometimes. There's no treatment unfortunately it sucks

Thank you for sharing. I wasn't familiar with Stargardt's but I have heard about RP.

I don't have a degenerative disease but I did have retinal detachment surgery and gained a cataract due to an accident, over a decade ago. It used to annoy me when people would ask me repeatedly if I could just get LASIK to fix it. As in, the same family members would forget and ask me the same question over and over. lol

Do you ever feel like people question your intelligence because of it, especially when they don't know that you have Stargardt's?

YESSSSSSSS I do feel like people question my intelligence. I just switched locations (I work in a restaurant) and I've been good about telling people straight away which I haven't before with any other job. People admit when they get to know me that they thought I was strange or slow because of the way I do things. They know now that I do things differently to adapt. One of my friends/people in my support group has cataracts and she has the same annoyance with similar questions as you and I. It's funny that people think we haven't considered the obvious yet lol

Will you one day be completely blind?

Do you feel as if you are prepared for that eventuality?

What does this mean for your life? Did you have a "dream job" that is now no longer feasible?

What will you do instead?

Luckily, I'll never be completely 'black out' blind. No one seems to be able to predict how much worse it'll get though. My central vision is gone to the point past legal blindness. I still have great peripheral range

I don't think I'm prepared, I got really scared about a year ago when it drastically deteriorated.

My dream job has been to be a YouTuber. I went to school for Nutrition but I realized it's not for me. I love the ability to communicate with people through that platform. It makes filming really hard because I can't see the camera clearly, so I never know if I'm in focus until post filming. Editing is difficult because I have to zoom in several times a minute to add effects etc

It has limited me from quitting unfavourable jobs and simply getting new work because employers are apprehesive of someone who can't see well.

The goal is to be self employed. Youtube may be it or it may be a stepping stone

What is stargardt's and how does it work?

Stargardt's is a recessive gene disorder that has caused the central part of my eye called the retina t deteriorate to the point of legal blindness. It affect younger people which is why it's categorized as Juvenile Macular Degeneration. Doctors can not tell me how much worse it'll get but it may plateau and stabilize. Because my retina has deteriorated, I can't see regular print. I use a 27" iMac that I zoom into in order to see what I'm typing. I can't recognize faces or see facial expression more than four steps ahead of me. Bright days burn my eyes because of my new sensitivity to light. It requires a lot of adaptation and positivity as it can be extremely frustrating at times but I am grateful that I have my peripheral.

Wow. I'm sorry. It must have been hard to type that paragraph

No worries. Typing is easy, it's the typos that get me haha

My niece has stargardts. She is 2. What can she expect?

I've been told that some youths with Stargardt's have had to learn braille by the age of 7 and then there are 50 year olds who are still allowed to drive because the disease hasn't deteriorated their vision as badly. It will all depend on her stress level, nutrition and unfortunately how the disease expresses itself in her. I have been told that wearing sunglasses, reducing consumption of vitamin A rich foods and reducing stressors will delay the onset or slow the progression.

Socially, be prepared for people to ask the same generic questions: Can't you wear glasses? What about lasik? How come you can still see somethings? There's a lack of awareness and information so many people believe that someone with Stargardt's isn't taking care of themselves or hasn't done the obvious

Alisha, thank you so much for sharing your story! Long story short, my mom (who is biologically my grandmom, but adopted me and has raised me since I was a baby) has Stargardt's. She was diagnosed in her early thirties, she drover herself to the eye doctor one day and he basically said you cannot drive anymore, you can't even drive yourself home today! I really could go on and on about how the diagnosis affected her life and the life of my dad and six older siblings, how I feel knowing that she has never really "seen" me (I was born about 15 years after the diagnosis), my fears of developing the disease (I am 26 now), etc. but I won't.

Overall she has adapted as much as anyone with Stargardt's can, she sees better peripherally, uses a special magnifying glass to read things, she still functions fine and is able to do many normal things but just in different ways and it takes a bit longer. Now that she is in her early 70s she has spent more years with Stargardt's than without, she doesn't really ever talk about her vision getting worse so I am hopeful that she will not lose all of her sight over time.

My dad recently took her to a trial for some special glasses that could help her vision, I think they were the eSight glasses or something similar. She said it was amazing and she could actually see, the only issue is the glasses are very very expensive she's not sure if it would be worth it. My dad said if she wants them he will find a way to make it happen, and this past Christmas myself and my siblings all considered pooling our money to try and get them for her but the glasses are bulky and somewhat uncomfortable and she said she really doesn't know if she would use them regularly enough for it to be worth it, she said she's become so accustomed to adapting it is just normal for her now.

I guess since this is an AMA I will ask if you have heard of those glasses and if you would ever consider using a product like that?

Again, thank you so much for sharing your story and bringing awareness about Stargardt's to many people who might not otherwise learn about this disease!

Hey thanks so much for sharing the story about your mum/grandma. It's inspiring to know that someone out there adapted at 30 and doesn't complain or mention it often. I think that's a sign of it not defining who she is or allowing it to break her spirits. yes I've heard of the eSight eyewear. I demoed it for a week in 2013 and I totally agree. It's really expensive and I couldn't rationalize the zooming in for $15 000 price tag. I tried it again for a few minutes in January the monitor is so much better but I still had a hard time imagining it making my life that much easier. It is uncomfortable because the eyepiece is huge, bulky and heavy. I feel like it's restricting as well because I rely on my peripherals and because it is worn around the head it cuts off my side view leaving only what I look straight at. I will say that it's good for reading because using m iPhone to zoom into print is tiring. Hopefully soon there will be upgrades to make it smaller or stem cell research will be successful and your mum and other Stargardt's people can get the cure. Until then, there's so much to be learned from this disease and how it challenges who we are

Who caught the diagnosis? I know Stargardts is an autosomal recessive gene, but is there anyone else in your family that has been diagnosed with anything involving their ocular health?

Do you see a low vision optometrist?

The third doctor out of the first 7 I saw in one year lol. I noticed I couldn't see quite as well when I was 19, they threw around the them 'Stargardt's' when I was 20 but a blood test confirmed it at the end of my 20th year

Few people in my family have visual issues and at most glaucoma and cataracts in older age. No one had heard of it before me

Yes I have one I see annually, she isn't very good. I've seen another doctor who isn't my opthomologist but she has been a mentor on this journey providing suggesting, redoing tests that my optometrist lazily has done and being positive. It really helps

I would recommend looking into the optometry schools near you! They have some of the best low vision optometrists and have a ton of tech to show you (: low vision doctors are hard to come by sometimes but if you can find a good one they are life changing! Good luck with everything!!

Yeah my annual optometrist is rubbish. The other one I mentioned is incredible she introduced me to many magnification devices and wha the optometrist who original prescribed me distance and reading glasses. They worked for about a year but her help has continued over the years

Do you get put down for your condition?

Do people often pitty you when they found out what you're going through? If so can it be annoying or helping?

What things do you miss from before you were 21?

Do you have a significant other?

What's your favorite color?

I used to be so worried about being judged, chastised and mocked for this. I kept it secret from the first three or so years. Pity was a worry of mine too, I finally shared my story on YouTube last October and the response was far from any of those fears. People have been understanding and curious and supportive.

I miss reading!!! I miss curling up with a good book and getting lost in the pages. I miss crossing the street confidently. It's funny to think I would be scared to cross at 27y.o. but I can't see the crosswalk across the street so I have to look behind me. Sometimes by the time I look behind me at the walk sign, I've missed my chance to cross. I miss shopping without having to ask for help with price tags and labels. Most of all, I miss being able to make eye contact with someone. I can't see faces and expressions unless someone is sitting beside me.

Yes, I have a boyfriend. He's the one who told me to write on reddit =)

My favourite colour is purple

[deleted]

27" iMac, zoomed it. I see this.

I was just trying to be funny because you weren't replying right away. I have a sick sense of humour. I feel bad now. I'll leave. Thanks for doing this AMA though. It's interesting.

haha it's all good sorry I was late replying this is my first reddit thread

[deleted]

I think she's holding up one finger for you...

HAHAHAHA