The development of content for this site is supported by your contributions, the sale of products through various affiliate programs, and my work as a writer, speaker, consultant and mentor. If you have been helped by the material on this site, please consider shopping at Sarah Jane's or making a contribution using the Amazon Honor System. Amazon Honor System Click Here to Make a Contribution Learn More About This System

RETINOPATHY OF PREMATURITY: INFORMATION AND RESOURCES

Sarah J. Blake

Last modified December 5, 2003

NEW!

How would you respond if suddenly you lost your vision? Have you ever wondered what it is like to be blind, whether it really means that all you see is blackness? How would blindness affect your relationships and your spiritual life? Sarah Blake answers all of these questions and many more as she tells the story of her struggle to regain the sight she lost due to complications of an eye condition resulting from premature birth. Read reviews and excerpts from her e-book, Past the Gray Curtain, and purchase it for $5.95.

Another ebook, Growing Strong, tells the story of how the impact of premature birth and disability shaped the author's faith and life.

I felt that my struggles had purpose, even if only to help someone else feel less alone.

Of course, the purpose was much greater than this. God promises to use suffering for His glory, and I can look back now and see that His Word is true. I am stronger because of the struggles, and I believe that God calls upon me to share what I have learned so that others may also grow strong through their struggles.

Growing Strong is available in e-book format for $5.95. For more information or to read excerpts, please visit the link below:

http://sarahjanes.growingstrong.org/ebooks/gs.html

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.
Google
 
Web www.growingstrong.org
3kitties.livejournal.com sjbtheology.livejournal.com

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.

Book Project

One of the projects I am working on is a book about ROP. I would like to have the feedback of parents whose children have ROP, adults with ROP, siblings of people with ROP, and educational and medical professionals regarding this project. If you would like more information about the book project, please visit the book page.

Discussion Archives

One of the newer features on this site is an archive of some discussions from the ROP list. It is rather selective because I had only my own archives to use, but it covers some frequently asked questions. If this is of interest to you, please visit the FAQ index.

A Note About the Online Registry

The ROP registry is down at the moment. I have changed Web hosts and am working to develop a new system to manage the registry. This requires learning additional programming techniques and may take some time. I apologize for the inconvenience.

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
Here are general resources about premature birth.

Visit the rest of the site.