RETINOPATHY OF PREMATURITY: INFORMATION AND RESOURCES

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In May, 1998, I began a project which has changed my life. I began to look for information about retinopathy of prematurity, the eye condition which initially caused my visual impairment and whose late complications have resulted in further vision loss. I did not know anyone else at the time who cared to know more than the standard explanation: "You were given too much oxygen." I searched long and hard, and at that time I did not find much in the way of patient information. I found a few Web pages with small bits of information, but none truly satisfied my intense hunger for information. I did find an online support group for people with ROP, and because of the encouragement from this group, I have become involved in a number of projects which I hope will help others to learn about ROP. I have put together this Website for the purpose of guiding people to the vast amount of information which I have found. I hope that it is helpful.

If this site can be improved in any way, please do not hesitate to email me.

Purpose of this Site

The purpose of this site is:

1. To educate people about ROP and why it is an issue of concern;
2. To provide practical guidance regarding living with ROP;
3. To provide guidance in locating on and offline resources relating to living with ROP;
4. To inform patients of research projects which have been or are being conducted regarding ROP; and
5. To assist in the development of an on-line registry of people with ROP.

My Story

If you would like to read about my experience with management of my ROP, please read my story. You can also read my thoughts on a variety of issues related to living with a visual impairment in Blindness in Depth.

Discussion Archives

One of the popular features on this site is an archive of some discussions from the ROP list which used to be hosted at Konnexions.com. This list is now hosted at Yahoogroups; and members can view the archives there. The archive here is rather selective because I had only my own copies of posts to use, but it covers some frequently asked questions. If this is of interest to you, please visit the FAQ index.

Related Pages

Rachel's page
Rachel is a child with ROP who has studied at the Southern California Conservatory of Music. On her page you can read about her progress and find some tips on music education of the visually impaired.

Malaina's Story
Malaina, a young adult with ROP, discusses her process of deciding whether or not to have surgery to remove calcium deposits from her cornea, a rare complication of ROP.

ROP links
Here are links to information about what ROP is, how it is diagnosed and treated, and other related information.

The Preemie Page
These are general resources about premature birth.

Sarah J. Blake has published many articles online and in print about visual impairment and related issues. She also writes about other health topics, disability issues, and inspirational and devotional topics. To see more of her work, visit her writing portfolio.

Do You Need a Public Speaker?

Do you need training or consultation regarding assistive technology, disability awareness, or a motivational speaker for your community event? Visit Sarah Blake's services page to find out how she can help.

This retinopathy of prematurity mini-site is part of a larger site providing information about blindness, disability, and other topics. Please visit the rest of the site.