- Marfan Syndrome
- Interviews
Randie's interview
How did all start?
As a child I was screened for scoliosis in kindergarten and found that I had Marfan Syndrome. My mother found me a great pediatrician and pediatric cardiologist and I was followed by a great health care team.
Do you already have a diagnosis? How long did it take you to get it?
I do have a diagnosis and thanks to my mother's advocacy it did not take long to get it.
For what medical specialties have you been treated? What has been the most useful specialty for your?
cardiology, vascular surgery, orthopedist, urology; I think the most important has been cardiology because my doctor was a Marfan Specialist so he could recommend other medical specialties that I would need to see to maintain my health.
What has been the most useful thing for you so far?
Having a great health care team has helped me the most. I would recommend finding specialists at educational medical centers who are very familiar with your condition. If you do't feel comfortable with a doctor that you have, search out others and see if they are a better fit. Be an advocate for your health.
What have been your biggest difficulties?
My biggest difficulty is having trouble reaching out and connecting with people. I feel that my condition and struggles make me different from others and find it hard to bridge that, mostly self-implied, gap I feel between me and "healthy" people.
How has your social and family environment reacted? Have your social or family relationships changed?
I think I have become much closer with my family and less close with my friends. I love my family and they have always been there for me throughout my journey and know my struggles. I don't feel a closeness with friends and find it harder to connect with them now that I have had so many different medical issues.
What things have you stopped doing?
Going out to parties, making connections with new people
What do you think about the future?
I think that the future is bright and I'm excited to see where it takes me.
So far, which years have been the best years in your life? What have you done during them?
My college years were some of the best because I was going out with friends and learning new things.
What would you like to do if you didn’t have your condition?
Something more physical maybe but I haven't really thought about that much.
If you had to describe your life in a sentence, what would it be?
Find the joy in every situation.
Finally, what advice would you give to a person in a similar situation?
Give yourself grace. Things are going to be hard, but you don't need to be hard on yourself. Try to find thing joy in the little things and do things that make you smile.
