Hot Springs Medical Site Award

From my Heart for Newbies to Macular Degeneration
Welcome
to my Macular Degeneration"Hope" Page

...dedicated to providing hope and helpful information for Macular Degeneration Newbies.

Goodwill Seal - Hope - Phenomenal Women of the Web

Hi, I'm Linda, from Vancouver
and this is my

"You've got to be kidding!"
expression...

A photo of Linda, looking doubtful

Table of Contents
for Easy Site Navigation

Blue_Swirl.gif (150 bytes) What is Macular Degeneration?
Graphic Bullet My Macular Degeneration Story
Graphic Bullet But I was Very, Very Lucky
Graphic Bullet My Results
Graphic Bullet In Praise of Submacular Surgery
Graphic Bullet News Release: Would-Be Art Thief Foiled!
Graphic Bullet My Mission
Graphic Bullet My Advice
Graphic Bullet Recommended Reading
Graphic Bullet My Favorite MD Links
Graphic Bullet About Me
Graphic Bullet Interactive Center

Note: The links in this website spawn baby pages.
To return to this page, just close the new window.

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This is my MD Story:

As it happens, Dr. M. was not kidding when he told me the reason I suddenly couldn't see was that I was suffering from Macular Degeneration, a disease of the retina which attacks some people slowly and insidiously, and others, like myself, with absolutely no warning.

On Friday the 13th of November, 1998, as I was quietly typing, I suddenly could not see well enough to read. The reason? I had lost the central vision in my left eye. It had gone from 20/20 to 20/400+ quite literally "in the blink of an eye".

What the written page looks like to me

This is a good illustration of what the written page
looks like to me.

For a sample of what some other MD People see,
click here.

The problem, I learned, was Wet Type Macular Degeneration caused by Spontaneous Central Choroidal Neovascularization. It was, in fact, painless - as long as you don't consider the agony of ignorance and confusion, and the looming threat of blindness.

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But I was very, very lucky.
First, my case was assigned to a doctor whose first recommendation was submacular surgery, otherwise known as vitrectomy. To view a very interesting 15 minute video desribing very clearly the symptoms of MD, both wet and dry, and the vitrectomy, visit the Manatee & Sarasota Eye Clinic website.

Second, I was lucky enough to be treated immediately - the surgery took place exactly 10 days after the symptoms were discovered. I was told it would be months before the outcome of the surgery would be known, but the chances for success were about 65%.

Third, desperate for information about MD in general, and my surgery in particular, I waded through internet. There I found a lot of dire and hopeless news - which I knew to be obsolete because I'd already had the surgery that all those articles said was not available!

Finally, I fell over the MD People Website and support group. Here, at last, was a resource enthusiastically providing the most current, comprehensive, clear and positive information, and lots of good advice, but also warmth, kindness, and hope.

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My Results:
After my submacular surgery at Vancouver General Hospital on November 23, 1998, I recovered a great deal of my lost vision. Read the full blow-by-blow description, "IN PRAISE OF SUBMACULAR SURGERY, or, I was blind, but now I see".

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My Mission: Providing Hopeful Information and Advice
Indeed, I was very, very lucky. There are others who are not so lucky. I'm on a mission on their behalf, now:

Reading correspondence from other "Macular Degenerates", I was appalled at how little help is being offered to people when they are diagnosed with this very frightening disease, especially those whose symptoms sound similar to my own. While submacular surgery is not suitable for everyone, if it could help, it should be made an option! And if surgery is not the answer, there are other new treatments. There are new techniques, new tools, new research...

There is new hope:
April 12, 2000: FDA Approves Visudyne Therapy for AMD.
November 27, 2001: IRIDEX Announces Significant Development in Clinical Trial for Prophylactic Treatment of Age-Related Macular Degeneration.
May 8, 2002: With bionic eye, subjects see light
October 1, 2002: Genentech Announces Preliminary Positive Phase Ib/II Data for rhuFab V2 in Age-Related Macular Degeneration (AMD)
Also, the medical community must understand the inestimable importance of the information and sense of community provided by support groups like the MD People website. New patients should be directed to support groups immediately, to help them deal with the initial panic that is inevitable with this terrible diagnosis.Finally, nobody should ever leave a doctor's office after having been diagnosed with this frightening disease without being offered EVERY conceivable form of treatment, service, and resource appropriate.

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My Advice:
My Heart
My heart goes out to the Newbies who come to these pages in search of answers. My advice to the Newbies: There are answers out there, and in here. Just keep asking. Never give up.
More advice:
Eat your spinach! Find out why. Click here to visit the Lutein Information Bureau website.
Take eye-targetting vitamins with anti-oxidants and carotenoids
Always protect your eyes from both the UV and Blue light ranges of the spectrum
Avoid smoke and pollution. It's a pretty sure bet that smoking contributed to my vision loss.
Don't try to go it alone. Join a support group - It's comforting to share with others who understand exactly what you see, but more importantly, how you feel.
Knowledge is Power! Learn as much as you can about this disease. Ask questions. Read as much as you can on the subject. If you can't read anymore, ask your loved ones to read to you.

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Recommended Reading:

Twilight: Losing Sight, Gaining Insight,
by Henry Grunwald

Overcoming Macular Degeneration: A Guide to Seeing Beyond the Clouds,
by Yale Solomon, Jonathan D. Solomon

Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight,
by Lylas G. Mogk, M.D., and Marja Mogk

Macular Degeneration: Living Positively with Vision Loss,
by Betty Wasson and James J. MacMillan, M.D.

Save Your Sight! Natural Ways to Prevent and Reverse Macular Degeneration,
by Marc R. Rose and Michael R. Rose

All of these books available through the LowVis Bookstore at Amazon.com. MD Support will receive a commission on all purchases made through this page. Thank you for supporting our important public awareness efforts by shopping at the LowVis Book Store.

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My Favorite MD Links - Bookmarks

MD Support logo

MD Support

Click on the MD Support logo to go to the MD Support page. I promise you, this is your connection to the best MD People you'll ever find. Also, a phenomenal resource for information and links.

Bonus link 1:
MD People Gathered in NYC June 5 - 7, 1999

Bonus link 2:
Paris with Karine and Gaetan, September 13, 2000

MD Partnership logo

Macular Degeneration Partnership

Click on the Macular Degeneration Partnership Logo to visit the MacD.net, an absolutely fabulous resource.

Retinal Ribbon - MD Foundation logo

Macular Degeneration Foundation

Click on the Retinal Ribbon to visit the Macular Degeneration Foundation homepage.

Lighthouse Logo

Lighthouse International

Lighthouse International is a not-for-profit organization providing a phenomenal collection information and resources for the blind or partially sighted. Make a point to visit also the Lighthouse Catalogue.

Low Vision Gateway logo

The Low Vision Gateway

The Low Vision Gateway is your starting point to access the low vision resources of the world.

In the Blink of an Eye

In the Blink of an Eye

This website is dedicated to providing information and support to, foremost, those afflicted by Histoplasmosis, and also to the general public to heighten awareness about the disease

Logo to come

The Official Marla Runyan's Website

Olympian Marla Runyan is a superb role model, for the fully-sighted as well as for the visually challenged. Read her story. She's a hero.

Brian's Eye Story

Brian's Eye Story

includes a comprehensive collection of very interesting information, especially on research and treatments.

Judy's Jolts of Hope image

Judy's Jolts of Hope

Judy tells you her story from newbie to now, candidly and perceptively, to provide other newbies with the benefit of her experience, and her advice for holding on to those Jolts of Hope.

Internet Resources
Note that this section includes commercial, for-profit sites. Please do not consider my including them endorsement or recommendation of their products. Endorsement and recommendation of such products should come only from your doctor, so please ask your doctor for his or her recommendations.

Lutein Info Logo

Lutein Information Bureau

Excellent source of information about lutein and nutrients for eye health. Some interactive bonuses - you can also test your lutein intake, calculate your risk, and test your vision.

ZeaVision Logo

ZeaVision

ZeaVision™ is a patent-protected dosage of zeaxanthin believed by a growing number of scientists to be an essential nutritional component in the eye.

Vision-Nutrition Logo

Vision-Nutrition.com

Shop online for brand name vision-oriented vitamins.

Science Based Health Logo

Science Based Health

ScienceBased Health develops and markets innovative nutritional supplements focused exclusively on promoting healthy eyes.

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About Me:

Age at diagnosis:

43

Occupation:

Secretary

Citizenship:

The world. Actually, I'm a Danish-American Canadian, with a Spanish Grandmother, an American sister, and an English brother who lives in Seattle with his American wife. My Mom and Dad (a Dane named Elise and a New Yorker named Oluf) have recently returned from two years of "barging through Europe", aboard their Dutch barge, Maria.

Guaranteed to make you smile:

My niece, "Sarah-Pie"

Humor and Wisdom:

Here is a collection of my favorite email-sourced Humor and Wisdom:

Interests:

Rowing, Dragonboating, travel, showing off Vancouver to my ESL Homestay Guests, and my own personal Rat Pack: Frank and Sammy.

Animated Cat on the Prowl
The Other Animated Cat on the Prowl

Please note: Credit for the animated cat graphics goes to Valerie. I've been a shameless plagiarizer! So,"Thanks, Valerie! - I especially love these animated cats."

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Interactive Center

Macular "Degenerates" Survey

Are you a Macular "Degenerate"?


Click here to try out this Survey!

Click to see My Heart the current Survey results.

Survey brought to you by:


Any opinions, questions, thoughts?
Unfortunately, Yahoo has discontinued offering Message Boards
so mine just disappeared (Aw, Shucks!),
but you could...

You might also want to read through the entries in my old Guestbook.

Thanks for stopping in. You're guest number .

Last updated June 1, 2005.

linda1958b@hotmail.com.

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