“Just Ask Me!”
Here, you can see me right after my annual follow-up examination. Everything’s ok! Fortunately, I’m already no longer thinking about my heart defect.
Sometimes, people give me funny looks.
I’m glad about the fact that you can hardly notice my heart defect. Of course, I attract attention when I’m at the pool. Sometimes, people give me funny looks. It does look strange after all.
However, I’d prefer them to say it right out in the open instead of putting me in a box. That’s why, sometimes, I even encourage them. “Just ask me,” I tell them.
In my job interview, I told my boss about my heart defect. I was lucky since he reacted in a great way. This was important to me. It is important to be able to rely on each other, also at the workplace.
Today, I’m living a good life with my congenital heart disease.
When I was a child I didn’t like the fact that I wasn’t able to keep up or to take part at all in many activities. Today, I'm able to understand such limitations in a different light, and it's easier to explain them to other people. This being the case, I think that living as an adult with congenital heart disease is much easier.
The annual routine follow-up is a must-do. When I’m lying there during the ECG examination I’m always a bit tense. My ACHD specialist, however, was very pleased with the results of today’s examination. I guess you can imagine how relieved I am.
Now I can fully focus on my next exam again. I am currently doing further training in international tax law. This may sound dry to some people. But I find this subject to be most interesting. I work in a tax consultant's office. And I love to advise my clients well.
I place high hopes in research.
I wish for research that also promotes quality of life in people with rare diseases such as me instead of contributing to sorting out and debasing people that weren’t born healthy.
That’s why I have a lot of faith in the Competence Network and the associated Register. That’s the reason why I participate. Without the research conducted with our data at the National Register, health care would not be as good as it is today, which includes the involvement of ACHD specialists and ACHD centers all over Germany. This is essential for the survival of people like me who have TGA or a different severe congenital heart defect.