MACULAR DEGENERATION IN THE YOUNG

Posted by LINDA on January 01, 1999 at 18:06:59:

My two sons both have md. They were diagnosed at the age of 14 years. If anyone out there has any information about the disease or possible treatment I would be very grateful to hear from you.

Posted by Paige on January 12, 1999 at 22:36:28: In Reply to: MD in the Young posted by LINDA on January 01, 1999 at 18:06:59:

Hello Linda,
I was diagnosed with a form of MD at the age of 10. Making it through school was tough with peer pressure being the worst at that age. There were many techniques that I used to get by including open communication with the teachers, having friends use carbon paper to copy their notes, etc. There are far too many to go into here.

It is hard to tell you what to expect from this disease. It acts differently in each person as far as the length of time it takes to progress. I am thirty now and my vision has gone from 20/200 to 20/400 uncorrectable in twenty years. My sight was pretty steady until I had children. Just in the past year it has reached beyond the borders of a certain area that my doctor used to tell the deterioration.

One thing I must ask you....my mother felt a sense of guilt that she passed this on to me. Please do not feel that. Had you known this gene existed in your family you still could not have changed things. Your sons need your support and that begins with acceptance.

Please email me if you would like or have your sons do the same. I have no problem talking about anything relating to MD. We all get by the best we can, right?

Your Friend,
Paige

JMD in the classroom

Posted by Alison on January 19, 1999 at 17:20:19:

What can a teacher do to meet the needs of a child with JMD?

Thanks,
Alison

Posted by Melissa on January 19, 1999 at 19:32:07: In Reply to: JMD in the classroom posted by Alison on January 19, 1999 at 17:20:19:

I am a student with MD. Right now I am attending a junior college. One thing that really helps me is when a teacher is doing work on the board to verbalize what they are writing. This way the student is able to take notes. Another thing that might help is having someone actually take the notes for the MD student, that way they don't miss anything.

Melissa

Juvenile MD

Posted by Anonymous on January 26, 1999 at 17:36:14:

My son - five years old - was diagnosed with juvenile MD. Of course my husband and I are confused. What will my son's future be like? Is there anything to say about that? At the moment his sight is rather good. When and how will we tell him? Who wants to share their experiences with us?

Posted by Terry Martino on February 15, 1999 at 13:46:53: In Reply to: Juvenile MD posted by Anonymous on January 26, 1999 at 17:36:14:

My thoughts go out to you. It's a shock to bring your child to a doctor and find out that "glasses" are not the solution. My daughter, at 14, was diagnosed with Stargardt's, a juvenile macular degeneration. I found a ton of information on the internet and a great support group at www.maculardegeneration.org--they really focus on juvenile md. My daughter's progression in one eye was rapid to 20/200 but appears stable in the other. She is a star basketball player, leading her league in points! and she was recently invited to join the honor society. With magnifier glasses she can read fine and overall has adjusted to such a big change as an adolescent. It's important to find people who know about this because the first doctor we went to knew nothing. I've since met many people who have shown us that this is real workable and there are many aids. We've been candid with her as we have found more information. She is now 15 and a half. Wishing you the best.

Re: Too young!

Posted by Mark Blankenship on July 02, 1998 at 14:24:10:

My college friend called me last night and asked me to see if I could find any specialists that he could contact in the Denver area. He was diagnosed with MD 2 years ago at the age of 24. He has since lost his helicopter pilots license and his vision has been deteriorating rapidly. He is afraid that at this rate, he may be blind in another year or so, and since he lives in Pinedale, Wyoming, is receiving little to no support. Any ideas??

Posted by Bob Elmore (Teresa) on May 20, 1998 at 22:57:33:

To her credit, she has the most incredibly upbeat attitude about it all. I know she's hurting but she deals with this as she did with breast cancer that was diagnosed at 37. The woman is a role model of endurance and I'm very proud of her.

As we begin to celebrate our 22nd wedding anniversary, I'm just very thankful I have her as my life companion and will support her thoughout the rest of our years.

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