- Ehlers Danlos
- Interviews
Sedegy's interview
How did all start?
I have been hypermobile all my life, and had multiple joint injuries as a child beginning with five cases of nursemaid's elbow between 4 and 6 years old and a full elbow dislocation when I was 7. Joint pains began in my ankles when I was 10, and the pain spread throughout my whole body over the years as the injuries started to add up.
Do you already have a diagnosis? How long did it take you to get it?
I do have a diagnosis, more or less. Technically I am diagnosed with Generalized Hypermobility Spectrum Disorder, not Ehlers-Danlos, but the two are so incredibly similar that I see an EDS-specialized geneticist for treatment and follow EDS treatment programs. The only major difference GHSD has from EDS is a lack of skin involvement. It took a full year of independent research and 8 months of doctor visits and testing to get my diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have been treated by primary care doctors, endocrinologists, rheumatologists, and a geneticist. So far the geneticist has been by far the most useful because he specializes in EDS and knows the condition intimately. He understands very well what I am experiencing and knows the best ways to treat it.
What has been the most useful thing for you so far?
I would say simply having a diagnosis has been a huge help. Doctors take me much more seriously now and are more willing to test and treat aggressively. Besides that, the muscle relaxers I take have made the most significant difference in my quality of life - they reduce my pain immensely. A close second would be my custom orthotics.
What have been your biggest difficulties?
My biggest difficulty at first was dealing with all of my symptoms untreated. When I started to seek a diagnosis, I struggled a lot with dismissal from doctors, but once I finally found my geneticist, my difficulty was finding a sustainable treatment plan. I am still trying to balance my symptoms with medications and their side effects.
How has your social and family environment reacted? Have your social or family relationships changed?
My family tries to pretend my condition doesn't exist. My mother refuses to acknowledge it because she has many of the same symptoms I do, and if she admits I have a condition and am sick that means she is, too. My father simply follows my mother's lead. My friends generally are accommodating if I need to leave something early or cancel an event, but they don't like to talk with me about it. My significant other is the most supportive and understanding, and lets me talk/complain/vent when I need to.
What things have you stopped doing?
As a child, I was an elite gymnast. I gave that up due to injuries caused by GHSD and switched to diving, but gave that up as well when I went to college. My freshman year I took up dancing and rock climbing, but have since stopped both due to pain.
What do you think about the future?
To be honest, the future scares me. EDS and GHSD are degenerative, which means that my symptoms will continue to get worse over the course of my life. It progresses quite slowly, but still progresses. I fear increased levels of pain and more injuries, I fear further complications and new diagnoses. But I know there is also much to look forward to, and that treatment options will improve as medicine progresses.
So far, which years have been the best years in your life? What have you done during them?
This is a difficult question. On the one hand, my senior year of high school stands out in my mind as one of the best of my life thus far. I had good, supportive friends, I was doing well in school, my pain levels were irritating but manageable and I kept busy with sports and extracurriculars. On the other hand, the 2+ years I have been with my significant other have been truly incredible, as they are such a source of joy and love and care and support no matter what. In both cases, I would say that it is the people around me, more than the activities I do, that make these years great.
What would you like to do if you didn’t have your condition?
I would love to get back into sports, most likely diving, dance, or rock climbing. I am working on getting back into dance a little, only two hours a week, though I have to be very careful of my knees and ankles. I miss the carefree dedication I had to sports when I was younger.
If you had to describe your life in a sentence, what would it be?
I'm doing my best, and that's all I can do.
Finally, what advice would you give to a person in a similar situation?
If you feel something is wrong, if you see that you're dealing with issues other people like you aren't, take it seriously. Go see a doctor. Look for answers and don't give up until you've found them.
