- Ehlers Danlos
- Interviews
Kendra's interview
How did all start?
I've experienced hyperhidrosis since my earliest memories and knew it wasn't normal because people, including adults, were grossed out by my sweaty hands! I knew by age 9 that I was feeling more pain than other classmates doing the same activity, but thought I was just a weak crybaby!
Do you already have a diagnosis? How long did it take you to get it?
I was 33 before I received the correct diagnosis. I kept an open mind and went to therapy and tried treating mental disorders the entirety of my life before I realized the doctors were wrong and this wasn't all in my head, there was something really wrong with me and my identical twin! Several images, ultrasounds, and a few surgeries later we realized one diagnosis explained it all: Ehlers-Danlos Hypermobility Syndrome, hEDS!
For what medical specialties have you been treated? What has been the most useful specialty for your?
My neurologist was key in diagnosing and treating me! After getting imaging done at his office and bloodwork, I also went to a geneticist, a rheumatologist, a cardiologist, an orthopedic surgeon, and an endocrinologist, and we have all the information we need to start treating and preventing other complications. My primary care doctor takes care of most all aspects of my health now.
What has been the most useful thing for you so far?
Oxygen to treat cluster headaches. Ring splints to correct hypermobility in my hands and thumbs. A diagnosis and educating myself about my chronic health conditions has alleviated many symptoms!
What have been your biggest difficulties?
Implementing diet change to Auto Immune Protocol! Missing work and paying for specialist doctor appointments! Life before the correct diagnosis!
How has your social and family environment reacted? Have your social or family relationships changed?
My family was angry with me at first but with time they came to realize how it has affected me. My boyfriend considered leaving me because we were both overwhelmed after I was finally diagnosed a year after we started dating, but we learned to live with it and manage it.
What things have you stopped doing?
I quit smoking! I stopped pushing myself and trying to be normal, I learned to love living with the restrictions of my disorder because that's better than dealing with the aftermath when I do get hurt doing something to irritate my condition!
What do you think about the future?
I'm optimistic that I can preserve my health and can enjoy life without living in fear of getting hurt. I know my limits and listen to my body now, instead of ignoring it or believing my anxiety causes my pain!
So far, which years have been the best years in your life? What have you done during them?
Right now! Because now I know what's wrong and can live around the disorder, instead of incorrectly trying to live like everyone else!
What would you like to do if you didn’t have your condition?
I would like to have been able to finish my college degree, and traveled more.
If you had to describe your life in a sentence, what would it be?
Find the humor in everything, if you can't laugh at it then it'll just break you.
Finally, what advice would you give to a person in a similar situation?
You know your body better than the experts do, listen to your body and trust it!
