Patient-based Registry

✌️ Meet Thomas!

My name is Thomas. I am 29 years old and I am a baker/confectioner. My hobbies are mainly cycling and running, I actively sing in a men's choir and enjoy meeting up with my friends.

📝 My path
I was diagnosed with Noonan syndrome when I was 14 years old. Until then, I had always wondered what exactly was wrong with me, as I often had encountered problems learning at school and I had also experienced bullying. I also had to overcome certain obstacles during my training. However, it took several visits to the doctor and some clarifications before I received a diagnosis. Since then, I have become more comfortable with the diagnosis. Noonan syndrome manifests itself in my appearance, my poor eyesight and sometimes at work, when I need a little more time to learn something new.

💬 Some misconceptions about Noonan
I sometimes have the impression that people around us do not trust our abilities. I experienced it personally through the criticism of people around me. Statements like “You’re not that good at it” or “You’re just different and ugly” or simply “Can you actually do anything at all?” have been part of a painful experience. I wish for people to believe more in us, in our abilities. Because we can reach every milestone, but simply at our own pace. Words of encouragement are very helpful.

🛡️ Thriving beyond Noonan and overcoming odds
One of my positive and unique strengths is that I have a fighter's heart. I have become a fighter who doesn't give up easily and tries everything to achieve his goals. I also learned to make the most out of my defeats. I also have very strong social and empathy skills, which I will soon be able to use in my career as a caregiver.

🌟 My hopes for the future
My hope is that Noonan syndrome can be better researched and that appropriate treatments are developped. My greatest wish is that despite the diagnosis of Noonan syndrome, one is considered as a human being instead of being labeled as disabled.

✉️ One last message
Never give up, you will reach your goals and milestones at your own pace! Believe in yourself and take it step by step, always heading towards your goals and dreams. You are very valuable and unique.