- Incontinentia Pigmenti
- Interviews
Kristen's interview
How did all start?
My daughter Lyla has a very angry looking red rash travelling up her body with yellow pustules in conjunction with seizures.
Do you already have a diagnosis? How long did it take you to get it?
She was diagnosed with IP in 3 weeks.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Treated for seizures.
What has been the most useful thing for you so far?
The team of doctors that Lyla has.
What have been your biggest difficulties?
Her vision is not the greatest in her right eye. She will have no peripheral vision in both eyes.
How has your social and family environment reacted? Have your social or family relationships changed?
We have grown as a family and have also had to cut out one family member that was not good for us.
What things have you stopped doing?
So far, there have been plenty of trips to our local hospital for appointments so it's hard to say right now.
What do you think about the future?
The future scares me. It is a waiting game.
So far, which years have been the best years in your life? What have you done during them?
The best years in my life have been caring for my children. They keep me on my toes.
What would you like to do if you didn’t have your condition?
I haven't thought like that much lately because it does me no good.
If you had to describe your life in a sentence, what would it be?
Challenging but rewarding.
Finally, what advice would you give to a person in a similar situation?
Do your research from legitimate sites (NOT Google), keep in communication with your doctors, make it to every appointments, become your own/your child's own advocate because you are all they have.
