Journey with Juvenile Macular Degeneration to Rehabilitation Counselor

by Steve
(Aberdeen, South Dakota)

I have had an interesting journey. At age sixteen I was seen by my local eye doctor.


I was not informed about my diagnosis but he did tell my parents that it appeared I had juvenile macular degeneration.

At that time I believe he called it Best's Macualar Degeneration. My vision at that time was still 20/20 in both eyes. I grew up in South Dakota however after a couple years of college a friend and I decided to head to California.

It was at that time I started to notice some vision problems. I went to the optometrist and she referred me to the Stanford Medical Research Center. It was then that I was informed that I had Stargardt's macular degeneration.

Unfortunately they did not have a very good bed side manner and I can recall how they introduced my new eye condition to me. He stated that I won't go totally blind but I would eventually lose my driver's license and not be able to read print. I left the office thinking I would be losing my vision the next day.

I quit my job and came back to South Dakota. I eventually finished college and have been working as a Vocational Rehabilitation Counselor for the Blind and Visually impaired for the past twenty seven years.

I would like to note that I have been fortunate in the fact my vision progressed very slowly.

I have worked with many other individuals who were diagnosed with Juvenile Macular Degeneeration but I have not seen any that have progressed as slowly as mine.

It took almost thirty years before I became legally blind and even at that level of vision I function very well.

I still hunt, fish, play basketball, and ski. I use Zoom Text and the Clarity CCTV at work.

So I guess I just want to say if you let it get you down it will and if you continue to keep a good attitude you can pursue many things in life. Utilize the resources available to you.

Contact your State agencies to know what services you can access.

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Oct 31, 2011
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Forgot one thing
by: Steve

I also am an avid golfer with a handicap ( no pun intended ) of around 13 and that's for 18 holes.

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Juvenile Macular Degeneration at 15 Years Old

by Porcher

Designing helps me relax.

Designing helps me relax.

When I turned 15, I was diagnosed with wet juvenile macular degeneration. It was a bit of a traumatic experience, to be sure, but I got through. Luckily, I was young enough that it was easier for my body to heal. Unluckily, we caught it too late for there to be any reversal of damage.

I went through three lasik surgeries (the one where they use a photosynthesizing drug and shoot a laser into the back of your retina) which have helped immensely.

I was also very lucky that this happened only in my left eye.

I am now 21 years old and I have not had any new "bleeds" in almost three years.

The best things I've found to help me are just living life. I am a freelance photographer and going to school as a triple major in design, English and creative writing. I have found that the best way to get through these sometimes tricky times is to stay positive.

If anything, the experiences have made me stronger and a better designer. I literally see things a different way, and that's what a designer is meant to do.

So really, don't I have the upper hand? I think so. I think the best thing I can do for myself is move forward.

I've written and illustrated my own children's books, and I think that helps me relax. I've also created my own business with little owls, and that has also helped.

REPLY

Thank you Porcher for taking the time to share your story. You are an inspiration to all. Attitude is as important as treatment!

Wishing you the best.

Leslie

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Jul 04, 2011
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Thank you for your story and art.
by: Susan

I am reminded every day that it can always be worse. You are young and I hope that there is a cure soon.

Jun 06, 2011
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Thank you
by: Ronnie

Your comments...and lovely artwork....have made my day. Thank you for sharing your positive outlook.

Jun 06, 2011
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Bravo
by: Barry F

You are indeed an inspiration. Stay here to help some of us older farts (I'm 54 this month)that sometimes feel sorry for ourselves. You are indeed unique. God bless you.

Barry F
Phoenix, AZ

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Maria with Stargardt Macular Degeneration

by Maria
(Edmonton, Alberta, Canada)

My name is Maria, 1984 year of birth (24 y.o.), born in Russia, now living in Canada.

Well, I was diagnosed with the Stardgardt's macular degeneration at the age of 16, when I was just finishing high-school and entering the university.

My eye sight started getting lower when I was about 10 years old, but back then I had just a slight problem with distance vision and wearing glasses was all the help I needed. During one of my regular optometrist's visits, my doctors suddenly became more concerned with my eye vision. Much more than usual.

I just wanted a new glasses prescription, but they wouldn't let me go. The doctors started proceeding with further examinations with special equipment and diagnosed me with this macular degeneration. Not that long after, I started noticing new kinds of difficulties seeing: to see an object I now had to look a little bit above of it - my central vision started going down significantly.

I started having problems reading, writing, and working on a computer - I basically have trouble seeing in details, the function that the macula provides to our eyes. To see I use my peripheral vision now .

So anyways, my vision dropped to 2/40 (approximately - I can see only the two top letters on the optometrist's scale with the correction) in three years. That has kind of stabilized on that same level since then, I think. I also have trouble seeing in the dark and when it's very sunny outside. I wear contact lenses, but that helps to sharpen my peripheral vision (low distance vision).

It has been very hard to live with this new condition in my life, first of all, emotionally and, of course, physically too. It has become a lot better now, since I have found more ways to adapt and have gotten used to things. I use a monitor magnifier to work at the computer and sometimes while reading. It still brings a lot of problems into my life. I can't drive and don't do a lot of things I would want to do, but I try to take it as something that will make me stronger and that I can accept and live with happily. I know there are lots of people like me out there and we all have to help each other and know that this is not the worst that can happen to a human-being.


Lots of love to you,

Maria.

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Jun 09, 2011
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Hi Maria and all with Stargardts
by: Cesar

Hi

I have Stargardts as you.
I am Canadian but moved to Portugal when I was 11, so now at the age of 22 and how Portugal doesn't really help people with eyesight and other problems.

I am thinking of going back to my Toronto, Canada.

There I read alot of articles of people getting help and I want to be able to go and do my eye sight tests and not have to waste 70% of my salary on the doctor.

Everything is very expensive here. It was hard to find a job with this problem as I can't see that great and don't receive too much and the little that receive, when I go to the doctors there it goes.

I have even started to go to a private clinic in Spain which takes me 4hours just to get there.
I would like to know some more information.

Contact me at cesar_oc1@hotmail.com
Thanks and don't forget that we are no less then other people. We can achive the same or even more. That is my goal. Make me a better life so one that I can have a family and hopefully some more sight.

Best for All

Jul 10, 2009
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Thanks
by: Lenore

Thank you for telling your story Maria. I've just been diagnosed with macular degeneration - you made me feel better

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Macular Dystrophy - A Mother's Efforts...We Can Only Try


(Harare, Zimbabwe)

My 40 year old husband and 10 year old son were both diagnosed with macular disease at the ages of 8.

For a wife and mother, this is something very hard to digest. I have made it a point to read about macular degeneration.

I pretty much have identified supplements that I give my son who is very eager to take them (my husband won't hear of it. He even refuses to go for yearly check ups because he gave up hope a long time ago.)

My son takes Forever Living Products supplements. Namely Aloe Bits 'n Peaches drinking gel, Forever Vision and Lycium Plus. He says he doesn't see any difference yet but I believe only time will tell.

Even if it only means that his vision stops deteriorating. I am very hopeful that a cure will be found. My son loves cars and anything mechanical and hopes to fly an aeroplane one day. He also loves cooking and is quite the artist. A true gift to us.

It breaks my heart that he doesn't like reading because its too much effort as it is hard to see the words but he is an intelligent boy. It would also be nice for my husband not to depend so much on me to read stuff to him. I do not mind at all but I know sometimes he thinks he will be bothering me so he doesn't ask me to do it.

I'm grateful for sites like these. It's amazing how much we can learn from each other and support each other from all angles of the world. xxx

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