- Oral-Facial-Digital Syndrome
- Interviews
carolyn's interview
How did all start?
At birth.
Do you already have a diagnosis? How long did it take you to get it?
My daughters diagnosis came when she was 10. Prior we had suspicion but all testing had been negative until technology advanced.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Some oral surgeries, cyst removals, eye muscle surgeries, and plenty of monitoring.
What has been the most useful thing for you so far?
We see a team of craniofacial specialists every year. They have been the most helpful.
What have been your biggest difficulties?
Not knowing much about the condition. Other than text book type stuff found on google which is all in doctor language.
How has your social and family environment reacted? Have your social or family relationships changed?
N/a
What things have you stopped doing?
N/a
What do you think about the future?
I'm not sure what the future holds because we do have brain abnormalities, and developmental delay. But we are hopeful.
So far, which years have been the best years in your life? What have you done during them?
I think right now, at age 10 for her is. Because we are finally getting answers that are concrete. And now we can plan, build, and help for the future.
What would you like to do if you didn’t have your condition?
N/a
We dont dwell. She is happy just the way she is.
If you had to describe your life in a sentence, what would it be?
Rainbows and dance parties for my daughter.
Finally, what advice would you give to a person in a similar situation?
Dont give up, keep pushing for answers.
