JUAN PABLO, PACIENTE CON STARGARDT, RELATA SU HISTORIA

My name is Juan Pablo Kind and I am an civil industrial engineer by profession.
I won’t begin by saying that my life has changed, rather my form of being. From the age of 20 the Stargardt illness has taken away the things you take for granted little by little.

You think they will be there for your benefit, but bit by bit they go and from one day to the next you can’t drive any more, it isn’t entertaining to go to the cinema, nor to talk of working with the computer and you even don’t know who greets you in the metro on Monday morning. Many of us feel obliged to walk head down, without being able to look forwards, afraid of not being able to recognise the handicap that accompanies us.

This thought causes us worries, we don’t have five minutes that we can devote in their entirety to a particular task without our mind and eyes conspiring against it. Of course, before our concentration returns, we do strange things like covering one eye with our hand and measuring the sharpness of our vision against the previous day. Optimists say “I can see more than yesterday”, while pessimists say “Today I see less than yesterday”. This bipolarity inherent in us brings us problems in our daily life, we go from feeling distressed to feeling calm, from happy to sad from seeing to not seeing.
Obviously we ask for understanding, a scarce commodity these days, and it’s true that many of us are stubborn and obstinate, but nobody will be able to help us if nobody really knows what our problem really is, or what our real difficulties are. If we are able to do this, we should feel satisfied. It’s a great step, but we must continue going forward.
The second step is to accept the help and support that is given. For this task, equally difficult, leaving our pride to one side is the main thing to do. We must understand that we can no longer do certain tasks and that we have to accept that other people do them for us. Take it easy, nobody will think that we are accepting help out of laziness, at least nobody who really loves us.
The third step is to repeat the first and second steps over and over again.
The fight mustn’t be against our own eyes, because we simply won’t win. Our great struggle is with our intelligence and willingness to accept our disability and that it might be with us for some time. So, when the day arrives, we will receive it in the best physical and emotional conditions possible.
I wouldn’t say anything, if I didn’t believe that a better future is waiting for us. T he immunological properties of the eye has made it one of the main organs being used for stem cell research, and it has been made it clear that they want to help us.
Science is always making advances, but it is us who make the difference between a slow or a rapid advance, and I am still thinking about how. In my case how can we unite the patients in Chile? For me the important thing is the desire and clarity with which we must move and get ourselves noticed.

Finally the fight in our everyday life must be with the arms we have at our disposal, and the fact that we lack one of the most important, doesn’t mean that we won’t win.

More stories on Rare Connect Stargardt

https://www.rareconnect.org/en/community/stargardt-disease/article/my-story-is-what-i-have-learned-up-to-now

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