Bubbly, bright and charismatic, 22-year-old Pnina is like any other young adult. Based in Sydney, she’s currently studying a Bachelor of Science, lives for the weekends and loves spending time with her friends.

There is however something quite special about Pnina. Diagnosed with Retinitis Pigmentosa (RP) at the young age of ten, Pnina is legally blind with only 5% vision. Acknowledging and accepting that she has RP, Pnina decided early on that she wasn't going to let this condition define who she was or let it prevent her from living a meaningful and exciting life.

Passionate about the plight of eye health, Pnina has joined The RANZCO Eye Foundation as a supporter of their annual community awareness campaign this JulEYE, to encourage all Australians - no matter their age - to get their eyes tested.

The RANZCO Eye Foundation met with Pnina to discuss her inspiring story.

When did you first notice there was something not quite right about your eyesight?

When I was little it started to become quite difficult for me to see in the dark and at night I would literally bump into things around the house. I didn't really think much of it at first but my parents became quite concerned and curious as to why this was happening to me. I guess we just thought, okay well maybe I need glasses. So I went for a routine check up at the optometrist, which then led to a doctor’s appointment who eventually referred me to an ophthalmologist.

I seem to recall that it was maybe when I was in year 5 at school that this was happening. My parents didn't tell me everything at first and I just figured I had less than average eyesight, something that could surely be fixed or would go away as I grew older.

When did you find out you had RP?

I was in Year 8 when I officially found out I had RP and that was when the bomb really dropped. I remember being given lots of medical brochures, pamphlets and leaflets by my doctor and ophthalmologist. I was bombarded with information, statistics and facts but none of it really seemed real. The condition itself seemed real – it just didn't seem real that I had it. Apart from struggling with my poor night vision, there wasn't really any other physical signs or symptoms at that stage. I didn’t feel ill or fragile or abnormal and found it really hard to believe and come to terms with at first.

Did you know much about RP at the time? Can you tell us a bit about it?

No I didn't really know much about it at all. I think my parents knew a lot more about the implications of RP but didn't want to alarm me too much at such a young age. We sort of took it one step at a time.

Retinitis Pigmentosa basically refers to a group of genetic eye conditions where early symptoms such as night blindness develops into tunnel vision. There are many different types of RP and everyone’s eyesight degenerates at a different rate, it really depends on the person. Some people don’t become legally blind until their 40s or 50 and retain some sight all their lives. Other people go completely blind as early as childhood. I’m 22 and am legally blind.

What was highschool like with RP?

During highschool when I first found out I had RP, I remember being quite embarrassed and self-conscious about my condition and not really wanting to tell anyone about it, not even my friends. Then a few people must have found out and it was like a domino effect – soon it felt like everyone knew about my condition.

But it was never really a problem. During school exams I was given special provisions when needed and always assisted with appropriate learning materials. In terms of social settings, my friends would always look out for me when we went out at night and make sure I was okay. All throughout highschool I remember my friends and family being so amazing and supportive. I don't feel like having RP ever really held me back at school, I was very much a normal teenager.

How has it changed you as a person?

It might sound a bit cliché but if anything I feel like RP has maybe given me a little extra something in life; something that makes me stand out from everyone else and see things in a different way. It’s quite ironic really as I often think having RP helps me to see things clearly and with more perspective. It helps me to see what’s important and real in life and to dismiss and ignore trivial things that don't matter as much.

So yes, I may not see the world like everyone else does but at the same time I love that I see things in a different way that is at times quite beautiful and magical. I remember when I was younger and still getting used to my condition and not able to see well at night, I used to have fun and make pictures in my imagination with the flashes and pops of colour that were dancing around in front of my eyes

I guess I’ve always had a good sense of humour and tend to remain quite positive about my life. I don't take myself too seriously and my friends know they don't have to walk around on eggshells or anything. I guess RP has shaped me into the person I am today

How do people react when they find out you have RP and are legally blind?

People often say to me “Wow, you’re so amazing how do you cope with being legally blind” or “how depressing knowing you’re losing your sight” and I just think to myself, well what am I supposed to do? Curl up in a ball and cry in an emotional heap all day long. Acting like that won’t get me anywhere or achieve anything; there’s no point spending my life worrying about what will happen in the future. I just try my best to live in the moment and enjoy my life now.

Everyone is thrown challenges in life that you learn to deal with and adapt to - and this my challenge. You learn to step up the plate, develop a coping mechanism and just get on with life. I am tough though; I know that and quite like that about myself.

What is your life like now?

After school I took a gap year and travelled to Israel where I really learnt a lot about myself - my potential, strength and resilience. I still have the same friends who I went to school with and having RP is quite a non-event thing really. They know about my condition, they love me and look out for me but it doesn't define me.

I’m currently studying a science degree at UNSW, which is at times really challenging because of the visual nature of the content including complex diagrams and precise measurements but I try not to be too hard on myself. I’m not trying to be a professor or a scientist or anything. I have just always loved science and psychology and am really proud of myself for pursuing my interest and studying it at university.

This JulEYE, what is your message to all Australians?

I definitely want everyone to know the importance of eye health and getting their eyes regularly tested. I guess in addition to that though I just really want everyone to realize and understand that people with visual impairments aren’t weird disabled people who should be pitied. We are just normal people. There tends to be such a stigma surrounding people with various health issues and it would be really great this JulEYE to better educate people about eye issues such as vision impairment and blindness.