- Ehlers Danlos
- Interviews
Amy's interview
How did all start?
It all started When I had to go to school I had trouble in my physical education class I wasn’t able to run as well and I would beg them to not make me a go to physical education I also had trouble going up all the stairs at school without extreme pain and I would always wonder why I was so hyper mobile
Do you already have a diagnosis? How long did it take you to get it?
I did not already have a diagnosis it took until I was 21 to get a diagnosis
For what medical specialties have you been treated? What has been the most useful specialty for your?
Any medical specialist you name it I most likely have been to other than a ophthalmologist and optometrist I actually I’ve never needed a good one because I get my vision test to have my yearly physicals and it always shows 2015
What has been the most useful thing for you so far?
Any medical specialist you name it I most likely have been to other than a ophthalmologist and optometrist I actually I’ve never needed a good one because I get my vision test to have my yearly physicals and it always shows 2015
What have been your biggest difficulties?
My biggest difficulties are probably how I have to wear braces and sometimes need to have a Casts and it isn’t Always because of the fracture but people when they see a Casts they assume that it is broken or fractured so I have learned to make up a story of how for example I broke my ankle do you have a few times when I actually was broke and now by I don’t know how to say that it’s just tendinitis it is similar to this saying that they teach doctors and medical school when you hear hoofbeats think horses first and then think of zebras because people when they first see a cast they think of a fracture or a broken bone they don’t think of another reason for someone to need a cast
How has your social and family environment reacted? Have your social or family relationships changed?
It has changed a little bit but it is a little confusing in my situation because of how I also have autism so I don’t completely know how to pick up on the social cues to figure out how it’s changed
What things have you stopped doing?
I had to stop doing karate which I really enjoyed I have had to not do Sports really luckily where I live there is a program called task which stands for team activities for special kids which they do things for adults to and I do sports through them and also I do Special Olympics and even doing some sports through church they’re accommodating of my physical needs
What do you think about the future?
I want to be able to live on my own and not in and ISL Which stands for individualized supported living which is kind of like a Group Home I live in one because of my autism and now I’m not able to drive or manage my money very well So they help me my budgeting for me and I would like to someday be a geneticist specializing in autism and connected tissue disorders I would also like to be another type of doctor I’m not sure what kind but as a sub specialist that specializes in childhood vasculitides
So far, which years have been the best years in your life? What have you done during them?
Eighth grade was one of the best years of my life I was not bullied in school I did not have to go to the hospital I got to be homeschooled for one semester and then also I had a good time during high school another thing that I really enjoyed in my life was when my brothers were born
What would you like to do if you didn’t have your condition?
If I did not have any of the 73 diagnoses That I have I would be in school working on becoming a doctor and I would not have to deal with having flashbacks of kids bowling me I would probably be my twin sister and I would not be an ISL that I have I would be in school working on becoming a doctor and I would not have to deal with having flashbacks of kids bowling me I would probably be with my twin sister and I would not be an ISL I would be going to school just like my sister or my brothers well my Twin sister is out of school now she graduated from Stanford and works for Facebook in California if I didn’t have these conditions I would be with my twin sister just like how my two brothers who are 18 and just graduated from high school had the choice of going to the same school for college if I were not diagnosed with any of these conditions I would be happier and I would actually get to see my twin and not be all the way in St. Louis When she is in San Francisco which is a long plane ride to see her my parents don’t trust me to fly by myself another thing is I have always wanted to build to be my own guardian and with all of my conditions I am unable to be my own guardian and if I didn’t have anybody’s diagnoses I would be my own guardian
If you had to describe your life in a sentence, what would it be?
I have 73 diagnoses and a twin sister who lives all the way in California for hours away by plane but that will not stop me from showing off how I am an autistic Savant
Finally, what advice would you give to a person in a similar situation?
I know that this is hard but there are ways to work through The depression of a medical condition and for me I have to see my twin being successful and see my brothers who are twins be at the same level and something that has really helped me is a therapy called dialectical behavioral therapy Which is also known as DBT And DBT Even though it was designed for just borderline personality disorder it helps me know how to distract myself from things that I am going through and how I am tridiagnosed Meaning I have a developmental disorder a mental health condition and physical disability I would recommend dialectical behavioral therapy to not just people who have mental illness but also people who have to struggle with these conditions
