- Noonan Syndrome
- Interviews
Svein Olav Kvinge's interview
How did all start?
I was diagnosed with a heart condition a few months after birth, the diagnosis (vsd) was wrong, although they discussed the right one (hocmj. Growth hormone was discussed because of short stature, but dismissed.
Do you already have a diagnosis? How long did it take you to get it?
I was clinical diagnosed when I was about 15 yo, and genetically diagnosed when I was 51.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have had heart surgery which significantly increased my fitness.
What has been the most useful thing for you so far?
To have knowledge of my condition, and meet other affected.
What have been your biggest difficulties?
To know that my life quality would have been better if have had proper diagnosis earlier.
How has your social and family environment reacted? Have your social or family relationships changed?
Nothing have changed, but I think all people around me have a better understanding of why I am like I am.
What things have you stopped doing?
Nothing really.
What do you think about the future?
It is a mix of optimism and uncertainty.
So far, which years have been the best years in your life? What have you done during them?
Hard to say.
What would you like to do if you didn’t have your condition?
I don’t know.
If you had to describe your life in a sentence, what would it be?
I have had a good life so far, and believe more good things lies ahead.
Finally, what advice would you give to a person in a similar situation?
Share you thoughts with a few good friends, find people with the same challenges as you have, seek out good healthcare professionals.
