- Loeys Dietz syndrome
- Interviews
Jbertz0223's interview
How did all start?
I was hyper mobile my whole life. I suffered first from a lot of osteoarthritis at a young age. This baffled doctors but I never got anywhere until I started bleeding internally in my 40s and it was found out that I was rupturing small arteries. This led to the findings of my aortic root aneurysm and my internal carotid artery aneurysms and tortuosity.
Do you already have a diagnosis? How long did it take you to get it?
I am clinically diagnosed at this time with no genetic match yet.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I was at Washington University in St. Louis and now I am at Stanford University for specialists for my aneurysms and tortuosity. I have learned that traveling to doctors who know your diseases is the best option.
What has been the most useful thing for you so far?
Support and information groups.
What have been your biggest difficulties?
All the travel involved going to the correct doctors.
How has your social and family environment reacted? Have your social or family relationships changed?
I am not sure. They feel the same. I am a more cautious person about what I can and can not do and that may have changed one things.
What things have you stopped doing?
My physical activities are very limited to keep heart rate and blood pressure low. I have changed my diet to keep my bad cholesterol as low as we can get it. So my whole exercise regiment and eating have been changed drastically. I no longer work due to arthritis issues and issues of stress and to much physical activity.
What do you think about the future?
I take it one day at a time.
So far, which years have been the best years in your life? What have you done during them?
My 20s as I exported life at that time.
What would you like to do if you didn’t have your condition?
I would like to go back to coaching kids in sports and recreational activities.
If you had to describe your life in a sentence, what would it be?
My life has had so many different rare occurrences I find it surreal!
Finally, what advice would you give to a person in a similar situation?
Find good doctors and listen to what they say, no matter how far you have to travel to get to them.
