Like normal, I started feeling down, I am going blind and why I am still trying to finish my PhD. It started asking what I can do before going blind which leads me to Quora, good answers, I wont go to a psychology but maybe a counselor. Read more from the Quora, some one posted on SecondSight. I read this ending blindness in National Geographic. I decided to go to my Twitter account, where I joined all those RP related twitter accounts. Guess what? They might have identified the cause of retinal disease. We still do not know why the NDA is not producing enough to fit the cell. This is very subjective, niacin is converted by the body from vitamin B3, so I am experimenting with myself, I am going to take food rich in vitamin B3 or the supplement…
Since the my last 21km last August, I never run more than that because I was concentrating on another thing on my bucket list, my PhD. Officially, I am done with 2 things in my bucket list, ran a full marathon 5H34mins and ran for awareness of medical research in for RP! #RPAwareness
If you would like to support my initiative: https://give.everydayhero.com/au/retinitis-pigmentosa-medical-research
Special thanks to Alex for the wonderful dinner, Trista, the amazing desserts and Lisa, for always being there for my runs! Love you girls heaps! Not forgetting the lady that gave me Allen Snake jellies!
The run experience, I started with the 4H20min pacers, slowly drifting off but is ok, is my own journey! I was upbeat till the end, the energy level was good. I was always running with the 35 years spartan runners! Another lady, her 200 marathons! Inspiration! Then there is those running for cancer. Most inspirational, almost heading back to MCG, there is this boy, cerebral palsy with his dad. Everyone was cheering for him, I past him and heard his dad asked him, “Do you want to do this?” He replied, “yes”. I turned back and saw his dad said we will do this together, his dad kisses him. Catching this moment melts my heart. Things happened for a reason, catching that moment showed me that the hardship I am facing is nothing compared to them. All the runners I came across, keep me grounded! This full marathon experience has been a superbly humbling one.
About the run organisation, there is no more energy drink after 21km, and no apple or banana end of the race. I walked the last 4km, because of knee problem. Honestly, it didn’t take me that long. Then my friend said even for 1/2 marathon, no apple or banana end of the race. I joined the year before and it was not like this! I am not even comparing to those overseas ones that I had ran before like KL or HK marathon. Even compare to Brisbane marathon, Melbourne Marathon really need to step up the game! #MelbourneMarathon2016
From a low point to a high point, the day before the race, I was told my dad was hospitalised and my dog died. I really want to finish my PhD fast and move on to the next stage of my life! Mentally, the starting part of this run, I was really anxious that I will not be able to finish. As the run started, I am imagining that Tung2, my dog is free now, the happy old Tung! Before this he had a stroke and can’t move. He was a good dog. Then the later part of the run, I feel I am so lucky, RP has no physical pain at all, compared to other diseases. I stayed upbeat all through the run because of this positive energy others generated!
“We are too busy to make a living till we have forgotten our dreams or is it that, we are so busy chasing our dreams that we have forgotten how to live? I thank early detection of RP, you make me realised life is more than chasing dreams. A simple word: living but extremely hard to balance!”
While walking home yesterday, the idea crossed my mind again. Since I am running, why not raise fund for RP medical research? Although I stated here RP because is part of me, in reality, all rare diseases need your support especially in medical research. Is so rare, hardly is money going in and no money means that the diseases will “claim more lives”. I know is not easy in medical research, any research to be exact. My hope is a way for early detection, which gives a way of preparing patients how to handle the disease at a later stage and the detection method is “cheap” to reach to 3rd world countries. Most cases of RP with no family history, only get detected when they are almost blind. Even if they have the money, sample in medical research can be “rare”. My previous post where I donated my tissue sample and blood to Centre of Eye Research Australia and Australia Inherited Retinal Disease Register and DNA Bank.
To support my initiative: https://give.everydayhero.com/au/retinitis-pigmentosa-medical-research
I would be delighted if you donate for RP medical research but if you don’t, consider donating to any medical research for other rare diseases, something you can place in your heart and be happy about. Most importantly, no matter how small your contribution, there are things that purely depends on you, it always begins with you.
Why is it so hard to cure rare disease? Because it is Rare! 😀 When you know you have rare disease, don’t be shy! I have searched, time and again, till I came across this research group that work on eye genetics problem. And today is it! I am donating my “gene” for research purposes. #RPAwareness
Why is this important?
No sample means no research, means never ever a cure! There are two approaches: one taking tissue sample while the other, taking blood sample, which I did both. If the same sample but uses different approaches, comparison can be made; which is more accurate or which approach is faster, etc.
How does it work?
Am I nervous? Of course I am! Before we started, I am being brief about the procedure and requested for my consent, which I happily gave.
The blood sample is like any normal blood taking procedure. The tissue sample is something I didn’t expect. A small section of your skin is identified, inject anesthetic and a small skin sample is cut. Painful? The anesthetic works, so no worry! 😛 Then they dressed everything up nicely.
Regarding cure, I am an optimistic person but realistic. Even if there is no cure in this lifetime, at least we can try to identify which gene causes the problem. Actually, the purpose of coming forward for this type of research is just that if they did find the defective genes, is about awareness. Is a rare disease, even if we can only help just 1 person, is a good thing.
You have to believe that if you have a rare genetic disorder, you have “special and valuable” genes.
After two weeks this is how it looks like in the featured photo