Welcome

When I was a little girl, retinopathy of prematurity was called by the name retrolental fibroplasia... My parents were very open about discussing my eye condition and prematurity with me; and I could pronounce and even spell retrolental fibroplasia by the time I was nine years old. I also knew that I was at risk of losing my vision due to the possible onset of glaucoma and that my eye might need to be removed if it became painful. However, there were many things I did not know. I learned a few along the way. For instance, I learned what a cataract was when I had one removed at the age of eight. There were other things I did not learn until much later.

In 1998, I began to educate myself intentionally about ROP. Several things prompted this journey: the sudden loss of my vision, a cross-country move and a search for a new doctor who could provide treatment, the availability of information online, and ability to scan and read articles at the medical library using relatively new technology. I became an empowered patient;. Twelve years later, as I face the fact that there is no more that can be done for my eyes, I am confident that I have made responsible choices in my treatment, even when risk was required. I am also confident that I am able to live well as a blind person. This has always been the case; for my parents chose educational options that ensured I would have the tools to live fully without sight from early in my life. My search for treatment has never been a fight to avoid blindness; but instead it has been a search prompted by my belief that I must use all of my senses to their fullest for the time available to me. I am thankful to my parents for both of these philosophies.

In this blog, I will share the things that have helped me along the way. Technology has changed a great deal over my lifetime; and I discuss this in detail on my technology blog rather than here. Here, I will discuss instead the philosophies that have caused me to make particular choices with regard to blindness: whether to use my vision or tactual functioning in a particular situation, when to seek help, and common lifestyle questions that face people with ROP.

I hope that you who are reading will leave comments and even discuss these things in response to my posts. Your comments will help me to know what kind of new posts will be useful or interesting to you. Please sign your posts so that I know how to address you in replies or new posts.

Welcome to the ROP Exchange.