- Ehlers Danlos
- Interviews
Krystina's interview
How did all start?
The eds started with several sprained ankles leading up to an ankle reconstruction surgery. Because of how loose my joints are he pushed for me to get a diagnosis from a geneticist. It was Ehlers-Danlos Syndrome hypermobile type. I am now in my double didgets of surgeries ranging all over the body including gallbladder, tonsils and most large joints. The gastroparesis I first started noticing that if I drank even a small amount of alcohol I would be doubled over in pain for around 5 minutes until I vomited from the pain. Then I started vomiting if I took one bite too much. No sensation of being full just vomit. A endoscopy showed food still in my stomach. 2 years later I got a diagnosis after a gastric emptying test. I have been referred for a gastric pacemaker.
Do you already have a diagnosis? How long did it take you to get it?
Eds diagnosis took about 5 months from when suspected.
Gastroparesis took about two years from start of suspicion.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Orthopedic surgeon-most helpful
Gastroenterologist
Primary
Urologist
Rheumatologist
Hematologist
Pulmonary
Physical therapy
Endocrinologist
What has been the most useful thing for you so far?
Surgeries. Different ones depending on part of the body.
What have been your biggest difficulties?
Being a large person
Getting doctors to look at you as more than just your weight
How has your social and family environment reacted? Have your social or family relationships changed?
Depends on the family members. Some sympathize others look at me as lazy. This is especially hard because of the fatigue.
What things have you stopped doing?
Almost everything. I can barely walk.
What do you think about the future?
Bleak. Trying to make a good one though. I'm starting my education over at the university of Windsor. I picked majors more mental than physical that I like.
So far, which years have been the best years in your life? What have you done during them?
My childhood and teens were the best. They were before I was diagnosed and I lived the life of a relatively normal person.
What would you like to do if you didn’t have your condition?
Travel the world
If you had to describe your life in a sentence, what would it be?
Bone sapping weakness and fatigue with constant runs to the bathroom for both ends.
Finally, what advice would you give to a person in a similar situation?
Find a routine that helps you. Dont feel bad when the stars you were reaching for never come in your grasp. There is lots of stars. Find a new one to strive for.
