As you hope I will continue to live

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Do you really believe they will find a cure for this damn disease (RP)?

This is the question I wrote on a well-known Facebook group that brings together patients with Retinitis Rigmentosa or Usher Syndrome and their family members.

With nearly 10000 subscribers it is a very active group and every day there are posts of all kinds. Stories of daily life, accidents reports, someone looking for emotional support, someone who shares the last medical report.

Many posts the latest news about possible cures, more or less successful tests, artificial retina, organic retina.

For over twenty years I lived and cope with Retinitis PIgmentosa and for so many years the news seems promising. At every visit the doctor talks about interesting results of that test or the other trial.

I attended some congresses and what I am left is the image of an American professor who talks about how he has able to slow retinal degeneration of a mouse. Blessed mouse.

So to the question above, I cannot hold back from answeringwith with a dry one

As you hope I will continue to live

This answer may sound harsh among the yes, no, the chiss and the various arguments that support stem, genetics, bionics, programmed cells, and so on.

Who to believe?
What to believe?

My answer could be read as a judgment or perhaps even as a vanity, especially if you know about my adventure to Everest Base Camp,  you are here to cry, waiting for a cure, here to hope, while I do extraordinary things you do not even dream of.

Here some interesting comments.

B. W. M. Honestly? Not in my lifetime. The best I hope for is a potential ability to slow progression for some. It’s a very complex disease with so many different variables between us all.

O. D. C. I believe the only option is bionic eyes. Not in our lifetime.
Why no cure? Because the retina is dead. Can’t revive something that is gone. Maybe they’ll find something to stop progress in 10 years? By then for most of us it’s too late. I’m legally blind anyways. Move on!

Yes, Move on! Like the next comments says

J.E. Yes, there is a balance to everything that is the law of nature…the cure also lies within us, we have to be strong to accept it and I also believe when someone has a weakness there is a balance of a strength but you have to find it and nurture it to get it out to its fullest potential.

The most interesting Point of View is from G.L who wrote

I’m comfortable where I’m at. If the can stop progression I’ll be good with that. I’m not sure what I’d do with perfect vision at this point.

I must admit that I also do not know who I would be witha  perfect vision. It took me so much time and energy to accept, to become who i am and to adapt, that now I would feel at least strange to return to a fully sighted life.

and when someone asked G.L. if he wouldn’t want to be able to drive again he writes:

Listening to everyone else complain about the cost (of owning a car and driving), I’m pretty comfortable riding the bus or walking places.

But another very interesting comment is about praying. Praying for who? God?  If you believe in God, it’s part of the “plan” for you to have RP.
I would want to hear the answer of someone who believes in God. What would he say about this? Isn’t true that God created us this way, with these limits, maybe because of his project for us?
That’s what they say, isn’t it?

In any case, most of the answers are yes or no. Believers and not believers, Hope and no hope.
I stll truly think we should focus on the present, live the life we have at the most of its potential now and if one day they will give us the good news, it will be a great surprise.

On the other hand I have to translate here twocomments I received in the Italian group, where the same question was asked.

A.C.S. Surprises are entrusted to the case. Research is a continuous work of people around the world that now share some results. Sure for those who do not read when something good will happen will be a surprise. However, we all live our lives, but also giving any information to those who do not know, at any level is part of the research.

P.M. Researchers are also hopeful and continue to study and look for a cure. What if they also would have no hope  …. Many diseases that were incurable now are cured or slowed down thanks to the studies of people who believed.

 

 

 

 

Being Dario. The video that shows how you live with retinitis pigmentosa. We all have limitations, some are recognized as a disease, other as disabilities, but to have limits is a way to remark who we are.
17th Retina International World Conference 2012 For those who participated and those who could not, Noisyvision has collected some interesting thoughts and ideas. But we would be happy to hear opini...

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2 comments from the community

  1. Ecco un commento lasciato su Facebook
    L.C.
    Credo che ognuno – normodotato e non – sia il risultato della propria storia: famiglia di origine, esperienze e relazioni vissute, educazione in senso lato, carattere, come e quando è stata ricevuta la diagnosi. Penso inoltre che, come per ogni sfida che la vita porta con sé, anche per una condizione degenerativa e invalidante, seppur non mortale, non esista una equazione assoluta o un univoco approccio da adottare. Date queste premesse, i concetti di straordinarietà/ordinarietà sono davvero relativi e, forse, non poi così prioritari. La domanda aperta “se avessimo la vista perfetta, saremmo automaticamente delle persone migliori?” può invece aprire degli scenari di riflessione e di azione interessanti, ricollegandosi a una considerazione che ritorna spesso. La disabilità definisce una nostra caratteristica, non la totalità della nostra persona. E allora, sì, concentriamoci sulla nostra persona, nella ricerca costante di quella che è la nostra ricetta personalizzata … con gli ingredienti giusti nelle quantità e qualità opportune, che possiamo individuare solo facendo e sperimentando. Che sia la speranza per una cura o la fede, che sia la vertigine dell’adrenalina o la sensazione appagante di una vita tranquilla, che sia l’informazione o il disinteresse per essa… l’importante è vivere e trovare delle soluzioni alternative per fare ciò che desideriamo per l’essere unico e irripetibile che siamo, nonostante i limiti.

  2. IO PENSO CHE::: VISTO CHE SI TRATTA DI UNA MALATIA RARA I MEDICI SCHENTIFICI E NON..NON SI OCCUPANO TANTO A PERDERE IL TEMPO.XCHE PER LORO NON CI SONO GUADAGNI ENORMI COME PREFERISCONO LORO…QUINDI VALE A DIRE ..CHE IMPOSSIBBILE CHE NON ABBIA UN SOLUZIONE….VISTO CHE FIN ORA SIA LA SCENZA CHE LA MEDICINA HANNO FATTO DEI PASSI GIGANDI…

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