- Síndrome de Klippel-Feil
- Interviews
juliana's interview
How did all start?
when i was formed in my mothers womb.
Do you already have a diagnosis? How long did it take you to get it?
Yes, it took while to find out, but it was seen in my genes.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Nowadays i do physioteraphy and used to swim. both are really helpful.
What has been the most useful thing for you so far?
Knowing my limits and having people who understand me. Having a support sistem and the right doctors is really helpful.
What have been your biggest difficulties?
the capacitism, overall. As its not a well-known disease, people usually ract to it surprised and tell me to not do certain things or whatever. I dont care, cause i know what i can and cant do.
How has your social and family environment reacted? Have your social or family relationships changed?
Since i was a child when we found out, i guess it was hard to find explanations and good pedriaticians that could help me have a better childhood. However, i grew on swimming classes and physio, wich helped me a lot, but was hard to have good friends, as kids would not know how to react about it. As i grew and now a teen, people dont care that much and i have great friends. They help me and support me, care for me and sometimes get positively curious about my stories.
My family always tried to help and understand how to accommodate me in the best way possible, and go after the best doctors around.
What things have you stopped doing?
A few. I love dancing, but i need to be in a really good healt and have strong muscles, or i could go into severe pain. I can't carry heavy wheights too, like schools backpacks or grocery shoppings, or it can force my back and go - again - into a lot of pain.
What do you think about the future?
I hope i get to live my best dreams, conquer the things i want and keep being surrounded of amazing people. I hope i be able to go out a lot, dance to nice music, eat great foods, laugh about fun jokes, see a bunch of the pretiest of views, and love.
So far, which years have been the best years in your life? What have you done during them?
Uh.... Childhood was amazing, obviously, but i guess around 15 and 16 (now) is the best time. I've been makiing many dreams come true, going out to the funniest and nicest of places with my best friends of all, been enjoying life like a teen, not how i walways dreamt of - laughts in gay and single - but how i need.
Been exercising a lot, going to medical appointments and keeping my healt in first place.
What would you like to do if you didn’t have your condition?
Damn... I think i would go into dance classes, every kind, would also go into a job to help my mom and all. But i really like how my life is right now.
If you had to describe your life in a sentence, what would it be?
Wild. Since i started it has been a wild trip out there, but im here for it!
Finally, what advice would you give to a person in a similar situation?
Dont go around ignoring Klippel-Feil, it will come after you like karma. I used to think it was bad and i needed to run from it, do whatever and not mind, but it always catched me and i was in a hospital bed again. Instead, try to befriend the disease. Learn with it, deal and cope. Its gonna be with you for ever, so dont try to sneak out of it, its not gonna work.
I promise, take care of your healt and be aware of KF, so you can live WITH it, not TO it.
