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Ursula Gueffroy

Dear Ms Gueffroy, you have been affected by AMD for quite a long time. When did you first notice AMD and did you have symptoms that indicated it?
I didn't notice AMD myself at the time. It was only when I had my glasses checked in 2002 that the ophthalmologist noticed that I had macular degeneration. Unfortunately, the doctor didn't give me any clues about the symptoms at that time. However, I knew the disease very well, as my mother had suffered from it and went almost completely blind within 15 years. Knowing this, the diagnosis came as quite a shock to me. At the time of diagnosis and even six to eight years later, I had no impairments whatsoever. But the thought that the disease was progressing accompanied and paralysed me the whole time.

How far has the disease progressed today?
Currently, my macular degeneration is very advanced, it has worsened a lot in the ten years. I can still see about ten percent in my left eye and five percent in my right eye. In the last few years, the deterioration has been faster than in the years before.

How does this affect your everyday life?
My multiple limitations started about seven years ago when I had to give up driving. I can only cycle when I am familiar with the area as my vision is blurred and objects 1.5 to 2 metres away appear out of focus. Due to risk of tripping, I always look at the ground when walking. In the beginning, I often fell down. However, this affects my perception of the surroundings. I do not recognise people coming towards me directly, but by their physique and voice. I need more time and concentration, this makes me unsafe in crowds or on the street. I love nature and in my allotment garden, which I have had for many years, I unfortunately only recognise the plants on the ground when I bend down. When I go shopping, I can no longer see the prices, even in the shop windows. Even at home, although I have designated places for things like keys, I often have to search and ask for help. Despite these multiple limitations, I can surprisingly live carefree and happy, something I would never have imagined before. My attitude plays a decisive role in this.

What in particular helped you to go this way?
I have repeatedly sought advice from the AMD network hotline and a local counselling centre. I use the various aids mentioned there a lot in everyday life. I was also always advised to join a group. At first I was very worried and afraid of seeing others who were worse off than me. But especially the group where we learned how to use iPhone and iPad and exchanged ideas helped me a lot personally. People are at a similar age, at a stage in life when ageing starts with many symptoms. It helps when someone says, "oh, I know that too, I'm struggling with that too", you can take courage again and then you can laugh together about what happened to you.

What message would you like to pass on?
I always thought my life would be grey. But over the decades I have noticed that my personality is not lost, no matter what happens. I have contact with people and do things that bring me joy. I still paint and am currently taking up photography. I am still the same person and I just need to change the way I do things.


This interview was conducted and recorded by AMD Netz (AMD Network) and translated by SciFiMed.
Listen to the whole interview here

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