I am happy to introduce myself, or if you will, tell my "story" to all those young people who are affected by retinal degenerations and to all others who are in some way involved with or interested in RP.
How did it all begin?
At the age of 16 and living my teenage years just like all my friends, I noticed that there was something wrong with my eyesight. This happened when I compared it with my friends in extreme lighting conditions such as trying to keep up with them riding a motorbike at night. Although I knew that my grandfather, who had died 20 years prior to my birth, was literally blind by the age of 40, I had no idea that there could have been a possibility to inherit the eye-illness.
At the age of 18, shortly after having obtained my driver's licence, I was told that my groving sight problems might be hereditary and identical to my grandfather's. This fearful fact was proven true when I was diagnosed with RP half a year later.
How did the news affect me?
Of course at first, the awareness of losing vision more or less with the same pace as my grand dad, was parallysing. How long can I drive a car? Will I get the exemption from the army? Should I ever have kids and should I turn down and change my career and study plans? Pretty soon I was able fo get over the first frustrations and tried to live and enjoy each day and the present. At the same time I tried to experience things I thought I would not be able to do later on On the other hand I tried to plan my life so well ahead that I thought would be the most beneficial when I eventually become blind at age of 40.
How do I see now?
At the current age of 33, I see quite the way I estimated 15 years ago. I see very badly in the dark, the sunlight is extremely painful for my eyes often causing headaches. I have a circular blind spot in my visual field with 1-2 degrees left in the center and about 40 degrees on the sides. Unfortunately 5 years ago, I lost the sight from my right eye in an accident mostly caused by the lacking visual field.
So far, I have been lucky to maintain both central vision (for reading) and pheripheral vision (for moving around). This has helped me to avoid difficulties typical of those having tunnel vision or macular degenerations. It has also been hard to make other people understand how I see. My motto has been "It is not always how well you see, but how much".
What has RP taught me?
Althoug it sounds crazy, at the moment I am glad I got a complete diagnosis and progress estimations based on my grandfather's case just when I started to make my career plans. This has helped me to concentrate on things that I can enjoy and benefit the most of years later. Living with RP for so many years has made me appreciate simple things and given me a lot of tolerance. RP has become part of myself, part of my personality. Nowadays when my RP is quite evident, it is easy to tell the reasons behind my sometimes strange behaviour to people I encounter every day.
What I miss the most?
Naturally, I cannot deny there have been and will be many things that I had and will have to give up. I used to be crazy about motorbikes. It took a long time to get over it. Same thing with driving a car, which especially is a sign of self-confidence and manhood for young men.
I really miss seeing the facial expressions, especially the beautiful and happy ones on womens' faces. Well, maybe this is not all that bad, when there are more less happy faces in buses, metro, on streets...
What I do now?
I moved to Helsinki from my home village about 5 years ago. I did this because I realised everything would be easier in a big town - all the services are close and public transportation works perfectly. It was also easier to find suitable jobs here. I have worked in different EU-projects, amongst others in the field of visual impairment. At the moment, I work as an export manager in small company.
I have been able to find many new sports activities which are suitable for partially sighted. I compete in sailing and alpine skiing. I still roller blade, ride tandem bike etc. I often try new crazy things like wall-climbing, tandem parashute jumping, diving and benji-jumping. I like to travel, meet new people and get to know different cultures.
I have been quite active in the RP-Society for 3 years. I currently am a member of the board. Unfortunately there are very little active young members participating in differnet happenings of the Society. Young people with RP tend to be so busy with their own engagements that they have little time for such things.
How does the future look like?
Gee, God knows, very open - no one can tell and I don't even want to know all the details. For a long time I had a lot of expectations from the RP research and different treatment possibilities. I am convinced that there will be promising and concrete treatments in the far future, be it total or partial. However, I have become more realistic about those treatments and try to concentrate on making my life with RP as enjoyable as possible. However, it is inevitable that I am very soon losing the last bits of my central vision. I have learned braille, use a computer with speech etc. The following project is to start using the white cane, which I take as an exciting challenge.
Lastly, I want to tell that the establishment of REY and meeting other young people with RP from different countries has been something I have waited for years. When I was a teenager with newly made diagnosis, I wanted to talk with other young people in the same situation. I also wanted, but also feared, to hear little older ones to tell about their lives with RP so that I could to put my own things more into perspective.
I hope my story gives a tiny bit of encouragement to some of you and assure that RP is not the end of the world. It sometimes makes things even quite interesting, just like the activities of our Youth Group.