RETINA YOUTH
TEENAGER
Made it to issue 13
A place for us.
I remember the days of early teenage hood; it did not seem that long ago! On my 13th birthday I went roller-blading at the local skate rink with about 20 kids and then my mum forked out for everyone to grab Maccas afterwards. I was on top of the world! I was a little porky kid back then. But I was that funny kid that everyone relied on for a good laugh. I only wore expensive dumb surf labelled stuff that mum and dad brought through gritted teeth. I was pretty spoilt and completely unaware of the world around me, yet I knew it all! OHH YEEAHHHH BABY! The good old days! 12 years on, nearly double my life away from that moment, an eye condition which effects us all, now has its own sweet newsletter, and that newsletter has entered into the “teenager” bracket, because we have made it to issue 13! And boy oh boy, just like the gym we stack it full! We even chuck a bit of protein in with a few wham bam thank you mam smoothies. The very very cool Molly Randall tells us her experience with RP before she takes off on her world OE! She also posted about her new torch recently, and having brought my own torch as well (I only just realised that aswell is not 1 word, haha man spell-check in word is boss), I take a look at “Gear”. And run a few comparisons on the latest and greatest lighting equipment, thanks to the crew at “Top Gear NZ”. As usual we take a look at the good news with “whats what” in the scientific world and the massive progression there is to take us out of the darkness and into full sight.
Just like Molly, I too will be taking off next month on a bit of an exploration of the world. And next issue will be brought to you from BC, Canada. So looking forward to that issue! Back on the ground floor though, our boy Joel Bell will be running the youth meet ups. So keep your eyes on facebook to check out where our next meet up is. Friends, who play together, stay together yo!
A place to inspire.
My story begins in 2003 when I was 13 years old. At 13 being cool is everything and so I was determined to get contact lenses (the glasses look hadn't become cool yet). After I had completed the visual field test my optometrist told me that something was wrong so I was sent off to Auckland with my mum for further testing.
I remember getting on a plane for the first time with my mum, I was so excited about seeing what it was like on a plane and I remember really hoping I would get a cute little spoon or toothbrush and some hard lollies that I heard they gave out. Clearly I was an easily pleased child.
I remember going into the hospital and the doctor doing various tests on my eyes then sitting me in a dark room with red light for what seemed like ages. After it was all over they told me I had retinitis pigmentosa. I remember not really understanding what that would mean for me. My mum seemed upset but I told her it was OK because I guess I figured it would be. I had always believed that any medical problem could be cured by a doctor. I mean you go to the doctor with a sore tummy or cough or broken arm and they fix you up or give you some medicine and you get better. Even with eyes you go to the optometrists and you get glasses. Don't like glasses? You can get contact lenses or laser eye surgery. It didn't really seem possible that there was something wrong with me that couldn't be fixed.
Through school I had the usual issues, bumping into things, falling over things and of course not being able to get around by myself in the dark. I remember on my best friends 18th birthday going into the middle of a paddock at her farm and creating cocktails with the random assortment of alcohol we had with us. When it came time to walk back to her house I realised I wasn't able to cross the bridge because I simply couldn't see it. So what should have been a five-minute walk home turned into a 1-hour trek up the hill to avoid the river. I am really glad we did that though and that even in my inebriated state I was able to make safe decisions around my eyes capabilities (or lack there of).
However even then I didn't REALLYrealise my eyes were any worse than anyone else. I knew they weren't good enough to play sport or that damn spot light game (does anyone else hate that game too??) but they were good enough to get by. Avoiding dark to light and light to dark situations, never being alone in the dark and of course always wearing sunglasses (my light sensitivity is quite something).
This state of denial and careful avoidance helped me get through my late teens and early twenties without too many difficulties. I went clubbing, I moved out of home, I moved in with my then boyfriend and it was then that I started to really notice my lack of vision. To be fair, my eyes were still pretty good. I occasionally bumped into things and the night blindness wasn't getting any better (I fell down the stairs occasionally) but it wasn’t until I was living with someone that I realised how bad they really were, with my then boyfriend pointing it out to me constantly: “Molly look where you are going” “Molly you are such a clutz” “Molly seriously use your eyes!!” This non-supportive attitude made me question whether I was maybe just a clutz and maybe my eyes weren’t that bad after all.
But by the time we broke up I was starting to come to terms with my vision, or lack there of. I was an early childhood teacher by this stage and loving my job. I felt like after years of office work I had finally found the job I was born to do. Finger painting and playing with lego?? Yes PLEASE!!!! I hadn’t really taken into consideration the deterioration of my eyes though.
About 6 months ago I started to notice that I was tripping over child sized couches and tables and chairs, especially chairs, quite a bit more than other teachers. Things hanging from the roof were not my friend either. I started to feel fed up with my doctor and the lack of answers I was getting. So I decided to do something about it. The first step was going onto Facebook and looking for a Facebook page that could help (It feels silly to say that now but I think most people my age would do the same). And I am glad I did because I found Youth Retina! You guys were (and are still) amazing. I got some great advice on different eye specialists that might be able to give me some more answers. I quickly made an appointment with Dr. Vincent and she was fantastic! She was able to reassure me by answering my questions and she referred me on to the Blind Foundation (who were also amazing). They were able to answer more of my questions and provide me with even more support and knowledge about my condition.
And this brings me to today. I made the decision (thanks to the awesome information I have been given) to do my big OE. In November I will be off to travel around South East Asia, then Germany for Christmas and finally I will be living and working in the UK so that I can save some more and see Europe. I had planned to do this in a few years but given the speedy deterioration of my eyes I decided it wasn’t worth waiting.
I will start cane training in a few days and I am excited to see if this saves me from the many embarrassing moments I have, falling flat on my face on the train and walking straight into people, just to name a few. I secretly hope to get a seeing eye dog because, well, who wouldn’t want an awesome dog?? But I feel like it won’t come to that, well I hope it won’t!!
Anyway I am so excited to go off and see the world and whatever life has in store for me over there. I understand that one day my vision may go but until then I will use my remaining sight the best way I know how and hope like hell that science can catch up with me soon!!
Stay strong my fellow RP peoples!!
Lil Chars Corner
Shake it Up
With the weather starting to heat up again, I have picked my 5 top-notch smoothies to get you out of bed and into the hectic season. I am pretty fortunate and own a vita-mix, which keeps the nutrients in the fruit but still blends it to a silky smooth consistency. However a Nutri-Bullet should do the trick too, you might even strike it lucky with a Briscoe’s pams version.
Green Smoothie
Blend until smooth 1 cup green grapes OR 1 banana, 1 cup water, 2 peeled kiwi fruit, juice of one lime and 2 cups chopped kale leaves. Packed with nutrients, this smoothie is great for cataracts and macular degeneration. Can be refrigerated for four days but best if enjoyed immediately!
Green Strawberry Smoothie
Blend to desired consistency 1 cup almond milk, 1 cup water, 1 cup of spinach, 1 cup kale, 1 cup frozen or fresh strawberries and 2 frozen bananas. Enjoy straightaway!
Veg Fruit Smoothie
Chop half a spinach and half a kale and add to blender with half a cup each of water and almond milk. Also add half a chopped frozen pineapple and one and a half cups of green grapes. Blend until smooth and drink a glass full of healthy eye nutrients!
Berry Citrus Smoothie
Blend together orange juice, toasted wheat germ and any type of berries. This delicious smoothie is best taken first thing in the morning and will help supercharge your day!
Eye Health Smoothie
Take one cup each of water and fresh carrot juice. Add 1 tablespoon spirulina and ¼ cup of raw sunflower seeds. Blend until smooth, enjoy and look forward to better eye health.
You will notice that all smoothies have a ‘green’ element to them.
Leafy greens provide nutrients to all the vital organs of the body. A sensible vitamin packed diet will definitely provide clarity of vision.
Many people believe they do have a healthy diet, but please bear in mind that, over the course of time, vitamins will deplete from your body and you will need to rebuild your supply.
A place to look the part, in the dark.
The dark is a super scary place! When I was a kid, I was so scared of the dark that I used to jump into the same bed as my LITTLE brother! Now that I am older, wiser and probably tougher than the boggy monster, the dark still beats me up. Now instead of emotionally, my shins bare the scars. So inspired by Mollys Led Lensor P5R, and my recent purchase of a Klarus RS18. Easily 2 of the best Day to day torches on the market. When I say “day to day torch” I am talking about a torch that I think is best for general use. Its not the most powerful torch on the market, but definitely the handiest, fits in your pocket, rechargeable via usb and styli. But you need to have a read up and decide which torch is for you.
Klarus RS18 - $129.90RRP
Product Description:
The RS18 from Klarus is a compact, powerful and rechargeable Flashlight, which uses a single 18650 to output 900 ANSI Lumens with its XM-L2 U2 LED which has a lifespan of up to 50,000 hrs.
There are some unique features with the RS18, which have surprised us. Firstly, it has a charging point at the side of the light, which is fully sealed, so no need for a rubber cover to protect it.
The USB charging cable (supplied) is magnetic so it self-locates when it is within 1cm from the charging point – making it very easy to use. An indicator light around the charging point illuminates either red (charging) or green (fully charged). The USB charging cable can be plugged into a computer, a vehicle (with either USB or with additional 12v Adapter), or via a mains socket (using a USB-to-mains adapter).
The second unique feature is the removable Glass Breaker at the tail-end of the torch, which can be used to break a window in an emergency to provide means of escape. When removed, the RS18 is able to tail-stand.
The third unique feature is the side switch and the way it works. A quick press will activate the light momentarily; a double-press activates the strobe; a press-and-hold gives constant-on. When on, a press-and-hold will change the mode and a single press will switch it off. The RS18 has a memory function, so it will remember the last light level used, and a hidden SOS function can be used for emergencies.
Output & Runtimes:
Based on 1x 18650rechargeable Battery:
▪High: 900 Lumens / 2hrs 50min
▪Medium: 210 Lumens / 10hrs
▪Low: 10 Lumens / 178hrs
▪Moonlight: 1 Lumen / 1475hrs
In all, this is the type of flashlight that you would want with you in an emergency. It makes an ideal light to keep charged in a vehicle or used as an everyday torch.
Led Lensor P5R.2 - $169RRP
Product Description:
The LED Lenser P5R.2 is a small rechargeable LED Hand Torch with a durable Aircraft Grade Aluminium Body, matte black Easy-Grip Finish that is also more abrasion resistant and One-Hand sliding Speed Focus™.
Inside this quality Torch is an energy efficient CREE® LED generates 270 Lumens of that can blast out up to 240 m.
The Light Output is superior because of the patented Advanced Focus System, which embraces a specially-calibrated Reflector Lens to establish a more homogenous illuminated field of view and better overall light distribution whether set for a near distance flood beam or intense spot beam for longer distance illumination.
This P5R.2 features the unique Magnetic Recharging System with a AA Lithium-ion 3.7 V Rechargeable Battery Pack that can be recharged up to 1000 times.
Superior gold-plated battery contacts resist corrosion and keep the battery running well.
At 117 mm in length the P5R.2 is so small that it will easily fit into a pocket or bag. It is IPX54 rated for dust and water ingression.
Each unit has a unique serial # to ensure its authenticity.
Packaging and Contents:
▪Hard Carry Box
▪LED Lenser P5R.2 LED Horch
▪Belt Clip
▪Wrist Lanyard
▪Lithium-ion 3.7 V Rechargeable Battery
▪AUS/NZ Mains Charger System
Technical Specifications:
▪LED: High End Power CREE LED
▪Luminous Flux: 270 Lumens
▪Beam Distance: up to 240 m
▪Battery Life: up to 12 Hours
▪Battery: AA Lithium-ion 3.7V Rechargeable Battery
▪Body: Aircraft Grade Aluminium, Black
▪Finish: Hard Anodized
▪Dimensions: L 117 x D 26 (Head) mm
▪Weight: 56 grams
▪Switch: Tailcap Switch
▪Sheath: Nylon Belt Clip, Black
Warranty: 5 Year NZ Importer Warranty
You can get both these torches from top-gear.co.nz
I have found them to be super knowledgeable on their torches. If these torches are out of your price range, or you are after something even more powerful, jump on their site, or give them a ring.
A place to meet.
Ok so Christchurch was ok. Just ok, we didn’t get half the people turnup, as we would have hoped for. But the people who did turn up were treated to an amazing night! Was a nice intimate evening with the President of Retina NZ Fraser Alexander, his gorgeous wife Kristina. Zoe Hill and her partner Ricky. Joel and George Bell, George’s partner, and me. We spent the evening at “Buddah Stix” (which according to Zoe, is a bit of a “Christchurch Institution”, ae Zoe?) and boy oh boy was it so good! It’s a Burmese restaurant that is to die for! I had a tealeaf salad and a deep-fried chicken tapas style meal, and it made Nescafe and KFC look like cats food! The evening was full of laughs and sharing stories. It was the first time we (except Joel) had meet George, and was so cool to hear his experience with growing up with RP.
With me leaving the country on the 29th of November, we have time for 1 last Youth Meet up with me in attendance, then its over to Joel Bell to organise the bits and pieces around New Zealand :D So the very lickty last meeting. The who’s the what’s and the when’s….
Auckland Nov 28
For more details, keep an eye on facebook, most likely a swell evening!
A place for good news.
For those that missed this article posted on facebook this month, it’s a pretty rad story. It’s a small leap in technology, but the fact the main stream public are excited about this technology, I hope it gives funding and knowledge or RP a push in the right direction.
There’s a new invention that can restore sight even to those who have been blind for decades.Larry Hesterfrom North Carolina was one of the first patients to receive the new technology, which gave him a chance to see again, after 33 years of blindness.
Larry Hesterlost his sight in his 30s, when he was diagnosed with a rare genetic disease calledretinitis pigmentosa. Itinvolves degenerative retinal changes, which lead to the loss of peripheral vision and the so-callednight blindness. The disease is hereditary in 60% of cases. There are 1,5 million people worldwide who suffer from retinitis pigmentosa.