Search

Ping2 on the RUN =D

I set my goals high! Yes, I fell hard all the time but time and again have shown me that I landed stronger, to climb again! When you know you are going blind, you wake up everyday not to meet others' expectation, but to work hard for what you truly enjoy and believe in. This is my journey

Category

Rare Disease

It begins with you

Recently, someone close opened up that she has multiple sclerosis (MS). Over the years, I knew she has problem but she never open up.  Is not because she didn’t know her condition but she fears people will think she has some sort of infectious disease and she didn’t want to burden anyone. The part of burdening someone, I can relate. Last year, I was told that another friend from primary school has ALS. Although both MS and ALS have its differences, but the similarity here is your body lose control because is a nerve problem. The story I was told, that friend went to hide because she didn’t want to burden her family. This type of disorder, at some point you need help. This too is a reminder to myself. This really melts down to education. Clearly, is not an infection disease. Yes, is genetics but you don’t choose your genes. I will put a scenario. Imagine if you fainted, no around you know what is wrong with you, lots of tests are performed but this could have been saved for other patients. And your family is worry sick! Now, let us turn the situation around, you fainted and the people around you knows what is wrong and have the correct procedure to help you. It really begins with you. If no one knows your condition, then educate them. Come out from that shell not only for yourself but others. I am very sure, everyone is more than willing to help 😍

After hearing stories of MS, actually someone commented this too in RP Awareness FB page, RP is not so bad. I am going to frame this as a maths problem because I am a nerd. What is the probability a person gets a rare genetics disease with no family history? Hell, I am one darn lucky girl! 👻 Don’t run away, face your fear! Live life to the fullest surrounded by the people you love!

Advertisements

Rare Diseases Medical Research

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.

Trigeminal Neuralgia

My mum have been complaining about face pain for some time.  Finally, a name is given to the “pain”, and as I am searching more about her condition, I come across this blog:

http://endtn.blogspot.com.au/

If you are in pain, lightly, there is something wrong.  I read a few websites and most stated, a lot of people are misdiagnosed and never knew their condition is Trigeminal Neuralgia.  Again, this melts down to awareness

Create a free website or blog at WordPress.com.

Up ↑