- Ehlers Danlos
- Interviews
DMgirl's interview
How did all start?
Complete dislocation of knee
Do you already have a diagnosis? How long did it take you to get it?
Yes, it took about 5 years to get diagnosed once I figured it out.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Pain management, neurology, orthopedic surgery & ob/gyn. Most helpful has been neurology & pain management.
What has been the most useful thing for you so far?
Pain control
What have been your biggest difficulties?
Multiple failed surgeries & doctors who have no idea what EDS is.
How has your social and family environment reacted? Have your social or family relationships changed?
Become more isolated & dependant on family. Lost many friends
What things have you stopped doing?
Hiking, playing tennis, long walks, anything that I'm unable to stop & rest. Feeling freedom.
What do you think about the future?
It's bleak.
So far, which years have been the best years in your life? What have you done during them?
My 20s. Graduated nursing school & started a career. Had my eldest daughter. Was very active outdoors. Very social.
What would you like to do if you didn’t have your condition?
Continue nursing. Go back to school & upgrade my skills
If you had to describe your life in a sentence, what would it be?
My life seems dreary & I have many physical issues, but I still try everyday & if I love, I love with all I am.
Finally, what advice would you give to a person in a similar situation?
Keep fighting!
