Saturday, June 22, 2013

A bit about Stargardts and how I see...

Apparently the song I posted last night would not play.  I will check it out and try to repost it sometime soon.

I thought I would post some information about the visual impairment that I have.
I obtained all of this via the Foundation Fighting Blindness website.
The site is a great source of information about many retinal degenerative diseases. 
Foundation Fighting Blindness

Stargardt disease is the most common form of inherited juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

The retina is the delicate light-sensing tissue lining the back inside wall of the eye. Photoreceptor cells in the retina provide vision by conveying information from the visual field to the brain. The macula is responsible for sharp central vision — for tasks like reading, watching television, and looking at faces.

Decreased central vision is a hallmark of Stargardt disease. Side vision is usually preserved. Stargardt disease typically develops during childhood and adolescence. Also involved in Stargardt disease is a region beneath the macula called the retinal pigment epithelium.

What are the symptoms?

The symptom that brings most people to an eye doctor is a change in central vision. A doctor looking at the retina of a person with Stargardt disease will see characteristic yellowish flecks in and under the macula. The flecks might extend outward in a ring-like fashion.

The flecks are deposits of lipofuscin, a fatty byproduct of normal cell activity. In Stargardt disease, lipofuscin accumulates abnormally. The Foundation Fighting Blindness supports research studying lipofuscin build up and ways to prevent it.

A decrease in color perception also occurs in Stargardt disease. This is because photoreceptor cells involved in color perception are concentrated in the macula.

How quickly does vision fade?

The progression of symptoms in Stargardt disease is variable. Visual acuity (the ability to distinguish details and shape) may decrease slowly at first, accelerate, and then level off.

A study of 95 people with Stargardt disease showed that once a visual acuity of 20/40 is reached, there is often rapid progression of additional vision loss until it reaches 20/200. (Normal vision is 20/20. A person with 20/40 vision sees at 20 feet what someone with normal vision sees at 40 feet.)

By age 50, approximately 50 percent of people in the study had visual acuities of 20/200 or worse.
Eventually, almost everyone with Stargardt disease has a visual acuity in the range of 20/200 to 20/400. The vision loss is not correctable with prescription eyeglasses, contact lenses, or refractive surgery.

That last line is the kicker isn't it?  With so many amazing break through technologies out there these days it is hard to believe.

When people ask me how I see, I do not really have a great way to describe it.  It is hard when you do not know what it is like to see well.  But basically when I look straight at something, it disappears, so I automatically look to the side or above whatever I am looking at.
Hence the "Are you looking at me?" issue.

When I look at people I can see them but do not ask me to tell what color eyes they have unless I can get very close...or they have those bright shiny blues like my little Ayla!
I will not necessarily notice an eyebrow piercing/nose piercing.  If you have food stick in your teeth, I will not be the one to point it out...sorry :)

I actually love to read.
I read books on my ipad and have the font set as large as possible.   Forget about paperbacks or even regular hard cover books.  Large print books...Yes but usually with reading glasses.  I used to listen to audio books on my ipod nano...and I loved doing that.  But that was when I was commuting on the T.  I guess I could do it now and try to get some cleaning and stuff done while listening... But I like the sitting on the couch part too much.

When I watch TV, I wear my Max TV glasses which magnify the screen  (about 2X I believe.)  We have a 60 inch TV and even with these glasses, I do not see detail.  I can read the guide if I walk up to the TV.

I can see color but sometimes I do have some difficulty.  I seem to be able to match my kids clothes pretty that's good.  But especially if I am looking at a small item I might not be able to identify the color. 

I think if I was suddenly able to see perfectly, I would probably get very sick due to the drastic change.  Honestly its hard for me to imagine.


Mary Jane's Playcare said...

Heather, this is truly a great article! I love that you put in the Foundations description of Stargart's. I am ashamed to say that even though I have a pretty good concept as to what "happened" to your eyes, I found the description extremely informative.
I also like how you explain to all of us how you see. What is difficult for you to see. What you use to help. And how you cope. You have great coping skills, Honey. Always have. You refused to let this disability get in your way as much as you possibly could. Often times giving your Mom a heart attack along the way. Miss Independence.
This article will be helpful to many people...I hope they take the time to read it. The way you cope with all the downfalls of Stargart's has got to be truly inspiring to those who are parents of children just diagnosed. Or to the young adults who have just heard this frightening news. Even to any other low vision people.
Good work,Honey. As always, I am so proud of you and your sensitivity. Love, Ma

Mary Jane's Playcare said...

I love reading all your articles, Heath. The break my heart, they make me proud. They are interesting and informative. But, best of all they are so You....written as you from your heart. Amazing.

Kerry said...

Wow, this is great! I bet there are lots of people out there with vision challenges who would love to read your posts on this topic.

Kerry said...
This comment has been removed by the author.
Alanna said...

I think I have that article memorized from the Foundation Fighting Blindness. I hate it to be honest. Not super encouraging to me, but as you have said before, it is what it is.
Love you for going through this for the last 30 years, for not giving up, for reaching out to other people like me, for making the most of what you have. Most important, for not letting this define who you are. I hope I can do the same as I go forward.