Three out of the six children in Deano's family have this disease
There are information pages on Facebook informing people of the honest truth about the ruthlessness of this condition. Below is a link to a page that tells the stories of individuals and families affected by RP
There are information pages on Facebook informing people of the honest truth about the ruthlessness of this condition. Below is a link to a page that tells the stories of individuals and families affected by RP
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| Stand By Me RP |
From the Vision Australia website
What are the symptoms?
Generally, symptoms develop between the ages of 10 and 30 years. Some of the first symptoms may include the following:
- difficulty seeing at night (night-blindness) or in dimly lit areas
- a narrowing field of vision
- light and glare sensitivity
Who is at risk?
RP is an hereditary disease that generally occurs in people that have a family history of the condition.
Can it be treated?
There is currently no standard treatment or therapy for RP. However, scientists have isolated several genes responsible for the disease and research is being done on stem cell and gene therapy.
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| The difference in vision for those with RP |
In essence this disease is quite a crewel one as many affected by RP start out without even knowing they are going to lose their sight until a few small changes happen to their vision and they go along to an ophthalmologist and receive their diagnosis. This can be daunting to some and emotions can run high when one is looking down a road where they can no more see the world around them as they once did.
Some comments I have read from those diagnosed and a not yet suffering from the full effects have been heart wrenching for me to read. I have kept these post anonymous because I feel they are so personal but I feel they need to be shared so the rest of the world has an insight into some of the deepest concerns of a sufferer of RP.
" I have RP and I am the only one in my family. It is hard because there is a disconnect with them. I need my families support. What do I do?"
"Yesterday, I noticed how much my eyes have degenerated for the first time and although still holding on to it..I'm scared that one morning i'd panic or breakdown and realize I was never really ready. "
"Why is it that I am so emotional just making an appointment for white cane training? It took me an entire year just to open the box that the cane came in, and I sat and cried. I know this will be a helpful tool for me, so why does it make me cry? Is it the fear of being labeled a "disabled" person? Is it the fear of judgment from other people? Why the sadness if it will help me?"
If it were me with RP I just don't know how I would cope. These brave people don't have a choice in life about what is happening to their sight, that is until researchers find a cure.
It is great to see that many will reach out in different ways in support groups, creating RP awareness pages online, or attend support groups in their communities to help each other. Some do it comically, others reach out through podcasts and some write songs
Deano brother Lorin writes music that helps us understand the world around him and conveys to us the magical melodies he hears in his head when simple events like rain falling happen around him. He captured the moment in music for which he received a golden guitar nomination.
I'm going to leave this post with the words of a song written by Dave Steele RP sufferer and Author of the book Stand By Me RP
Lyrics to new song I've just written
I'm searching for the ones like me
Who find it hard with this RP
I'm searching for the ones like me
through shrinking tunnel try to see
I'm searching for the ones who know
Who let their inner feeling show
I'm searching for some more like you
Who've walked this road within my shoes
I know I've still not reached you all
not helped you up from blindness fall
Use poems verse to tell our tale
of every win and every fail
Speak of the things that's hard to say
the obstacles put in our way
The misconceptions hold us back
They think that all we see is black
I'm searching for the ones like me
Who find it hard with this RP
I'm searching for the ones like me
through shrinking tunnel try to see
I'm searching for the ones who know
Who let their inner feeling show
I'm searching for some more like you
Who've walked this road within my shoes
I've sung my song for just two years
told biggest dreams and darkest fears
I've opened up my heart to you
with every crack you were my glue
For all the things the RP took
I wrote it down within my book
So share my words to everyone
We'll still be us when visions gone
I'm searching for the ones like me
Who find it hard with this RP
I'm searching for the ones like me
through shrinking tunnel try to see
I'm searching for the ones who know
Who let their inner feeling show
I'm searching for some more like you
Who've walked this road within my shoes
Still every day I bleed on page
with all I'll share each RP stage
I hope my words will make them think
When faces fade within a blink
I hope that more will pick the cane
not isolate and feel ashamed
For independence we must fight
despite this glare and blinding light
I'm searching for the ones like me
Who find it hard with this RP
I'm searching for the ones like me
through shrinking tunnel try to see
I'm searching for the ones who know
Who let their inner feeling show
I'm searching for some more like you
Who've walked this road within my shoes
By Dave Steele (c)
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