RP and me - and maybe you!

Retinitus Pigmentosa is an eye disease that affects both night vision and tunnel vision, which - in spite of continuous research - there is no cure for.  Although RP is said to be the third largest cause of blindness it is still a relatively unknown disease to many.

Despite its crippling affect many RPers are able to get by for years without the aid of a white cane or the need for dark sunglasses.  But in many ways this sparing of the inevitable can be a torturous journey.

My journey began when at aged sixteen I was diagnosed with the disease and promptly told I would go blind by the age of 40!  Any aspirations I had then of being a cricketer or have a career as an artist forever were nullified there and then.  But they knew less about RP in 1979 than they do now.  In the twenty-seven years that have passed since then I have lost sufficient mobility sight to be made legally blind but I still have relatively good, though not brilliant, central vision.

The first sign of there being something not quite right with my eyes was when I realised they weren't adjusting when switching the bedroom light off at night.  No longer was I able to see shapes.  It was just a blanket of blackness.  For weeks I tested out this new phenomena every night until finally I let on something was wrong.

RP tends to affect night-vision first then later on the peripheral vision, thus, bringing about changes to the daytime vision.  This happened to me about three or four years after diagnosis.  My sport was cricket and after seven years playing for a local club I realised I was losing sight of the ball in the field and gave up the game.  I was twenty-one.

But cricket was just one of a number of things I had to give up.  When aged eighteen I took a driving test in pouring rain but failed miserably after drenching a pedestrian by swerving into a large puddle - neither of which I recalled seeing!  But by then I noticed driving at night was nigh on impossible anyway and so promptly gave up.  It was the first time I really felt RP's curtailing of one's independence.

Once diagnosed I was immediately referred to Moorfields Eye Hospital in Old Street, London, where I have had annual appointments ever since.  I have had one operation so far, to remove a cataract from my left eye.  I now have one developing in my right and so anticipate another operation in the not too distant future.  There is a 40% risk factor for RPers compared with 1 in 1000 for those with otherwise normal sight.

I have learnt down the years that there are many forms of RP, which determine the rate of sight loss in different ways, ranging from blindness as early as childhood to a mild form of sight loss in old age.  In 1979 I was told I had the worst of three main types ie the "recessive" type, which I was informed more or less guarantees severe loss of sight.  But how severe?

Despite continuous research predicting outcomes remains difficult especially when loss of sight can fluctuate.  For example, one could experience severe loss over a two year period but then become stable for the next ten!  Or the pattern of loss could be the oopposite way round...... 

This teasing trait of the disease is most unnerving for RPers whom are constantly mulling over the question, "How much can I see today compared with yesterday and how much will I see tomorrow compared with today?"

As my sight has worsened so has the struggle to appear normal and independent in the eyes of others.  For example, it took me until March 2006 to find the courage to admit to Moorfields' Welfare Dept to needing a white cane.  Six months later and pride is still in the way of me using it (admittedly, a trip  to London's West End for eg would cahnge that!).  Although I tend to stick to local areas I still have moments when I bump into people, benches, lamp-posts etc (begging the question, Why don't I use the cane then?!)  But those are the times when  my instincts to appear independent become heavily challenged. 

Then I start to feel isolated.

Since being diagnosed I have probably come across as little as five people with the same condition.  I met one girl through the internet and we shared our experiences.  It was the first and only time I have been able to do this with anyone in person.  Sadly, she was facing the dilemma of telling her boss about her condition at the time fearing losing her job (something a number of RPers go through).  She also found it difficult talking about her RP and we eventually moved on.

I wonder how much you have read so far you are able to relate to, especially about feeling isolated...........

Well, about three years ago I came across an email group for RPers on Yahoo.  For the first time I was not only able to read about other people's experiences and feelings but was also able to offload mine, as regularly as I wanted to.  And for the first time I no longer felt isolated.

Indeed, this group has brought together many RPers from the wilderness.  Despite support I've had from family and friends I could never expect them to fully understand the inner turmoils of having RP.  But the members of this group are able to having gone through similar experiences of isolation and anxieties.

Members are made up of RPers of varying sight-loss from around the world.  Some contribute daily offering support and advice to anyone needing it, especially to new members often with many questions or anguish to offload.  And not all postings are about RP either.  Members seek support, advice or share jokes on just about anything, such is the family atmosphere within the group!

Even spousers, partners and friends of those with RP become members looking for their own support and advice as well as that for the RPer(s) they know.

One may not feel the need to contribute postings regularly but it is a comfort to know the group is always there. 

If you would like to sign up to the group then click on:

http://groups.yahoo.com/group/rp-friends/

The email address is:  RP-Friends@yahoogroups.com

You can also visit the RP-Friends Home Page for links to all its RP-Friends resources

HTTP://RPFRIENDS.HOMESTEAD.COM  

Yahoo! Groups Links

Other links:   http://www.familyvillage.wisc.edu/lib_retp.htm

Anyone reading this who recognizes the symptoms of RP either in themselves or in somebody else but are not sure what to do next my advice would be to ask your GP to refer you to a specialist to be diagnosed.  Perhaps this advice is obvious to many but there are some people who feel at a loss as to what to do.

I know this page has little to do with Kiana Icons but if one person gains something from the information above it will have served its purpose.