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What is Retintis Pigmentosa?

Posted Mar 20 2013 10:53am

Retinitis Pigmentosa is a degenerative condition affecting the eyes, causing a severe impairment, tunnel vision or even blindness over time. For those who suffer it, it can be incredibly difficult to manage at first. Janet was diagnosed around 20 years ago.

“My eyes have never been perfect but when I started knocking children over at the nursery I worked in, I realised something was wrong with my field of vision. After a number of tests, I was diagnosed with Retinitis Pigmentosa. They also called in my children for testing as it can be hereditary, and sure enough, my son was showing early symptoms too!”

Janet has since deteriorated and has tunnel vision, meaning she requires a blind dog and a white stick when she goes out for a walk. However, Janet does not let this affect the life she leads.

“I have always walked a lot and started attending a running club a little while ago, but it wasn’t really for me, as most members were training for competitions! I have always had a desire to run though. My problem is mobility. I would be ok on a straight run but obstacles like people, bollards, or curbs pose a real problem for me. If I am sitting still or standing still I’m ok and can see which may sound odd, but it is frustrating for me. I am considering a guide runner to help me pursue this new hobby. I see myself as a fairly fit person considering my age (56 this year!), and I have done yoga for years, as well as walking my dogs (one of which is my guide dog). My favourite thing though has to be trampolining with my four grandchildren, soon to be five. I also enjoy going swimming, tai-chi and meditation.”

Since her condition will get worse over time, Janet has to be prepared to tackle it, but she does have an incredibly positive outlook.

I do know that going out on my own will become difficult, but I will keep doing the things I can for as long as my sight allows. For now, I am managing well but I do realise in time that I may need additionalhealthcare suppliesto help me maintain a decent quality of life.

“I receive an email from a charity supporting people with vision problems entitled “ Fighting Blindness” and that is exactly what I feel I do every day: I fight blindness. My son is fighting too, and I do believe he is in denial to an extent. However, this does not stop him pursuing hobbies and, like me, is keen on sports, particularly running and he has even done a half marathon or two. It just shows what you can do when you set your mind to something!”

Janet is living proof that a disability does not have to hinder you, and it is in fact possible to have an enjoyable life even when something tries to stand in the way! She is motivated and excited about her future and we can learn a lot from her positive attitude.

If you are affected by Retinitis Pigmentosa, search online for more information. You are not alone!
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