ANE is an Ultra Rare Disease. Adults that have endured an ANE attack are even rarer. We thank one of our ANE members for sharing a peek at her life.
Where do you live?
I live in Sneek, a small place in the north of the Netherlands (near Germany)
What is your favorite food?
I like spareribs. In a restaurant I usually take spareribs. I have some friends; they are cooking with love and interest for food. I love it to eat with them. Doesn’t matter we eat; what they make it is all good!
How old are you?
I am writing this on the 9th of January and tomorrow I will become 41.
What do you do for fun?
At this moment my life is all about working on my body. I have been ill last years. And each time my legs and energy are getting worse. So if I don’t practice then I am taking my rest by watching TV/Netflix, playing with my cat (Cootje), Face Book or just rest….
In the summer I like to go outside. I love to be on the water every day. As a volunteer I am leading a group of volunteers by canoeing. I was a member of a rescue team by my sailing club, I like to sail. Unfortunately I can’t do it anymore. But I am sailing with a group of people with a handicap. That gives me the possibility to enjoy the water as long as I want.
What advice would you give for someone with ANE and what gives you hope?
I am very glad to know my diagnosis. I know it now for a little more than a year. I am happy that the medical area around me knows what to do if I get ill. The little things in life are getting more important in life. Tomorrow it’s my birthday and each year I celebrate it because you never know if you can celebrate it over a year again.
It is hard to live with the damage of ANE. My legs and arms are weak, my energy is low, learning and concentration are also difficult. The only thing I can do is enjoy the things which life makes more beautiful. I don’t think a lot about the future. I live here and now, that gives me strength to enjoy the people around me and each step that makes me better.
And I am so glad that I found you. I am not alone anymore with my struggle. I am not an alien anymore (living with a handicap without knowing what it is, is hard and difficult). It is so good to know that Kim & Rachel are fighting for our disease. That gives me hope and strength. They are my heroes!
And I must say. I am very lucky. Have you ever heard of Epke Zonderland? He has been an Olympic champion and world champion in gymnastics/horizontal bar. He is very strong. And the best of all, he is family to me. (The son of a cousin of my mother).
That gives me a lot of strength. If he can do the things he is doing than I can live with ANE. Our DNA is strength.
Epke Jan Zonderland is a Dutch gymnast and 2012 Olympics gold medalist in the high bar. He also won the 2013 World Championship and the 2014 World Championship on the high bar. He is nicknamed “The Flying Dutchman”.
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