- Gastroschisis
- Interviews
Kenziegrace99's interview
How did all start?
This was a birth defect that I was born with. It has been a life long journey with Gastroschisis.
Do you already have a diagnosis? How long did it take you to get it?
Well, being born with your intestines on the outside is a pretty simple way to be diagnosed haha. There have been other diagnoses throughout the years attached to that main diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Not a whole lot of specialties if I’m being totally honest. Nobody here seems to really understand rare defects and disorders so it’s always hard to get a professional to hear me or see me.
What has been the most useful thing for you so far?
Changing my diet, heating pads, self advocacy is also a big part too. Trying to keep learning.
What have been your biggest difficulties?
Being heard and not dismissed by medical professionals. It makes it very discouraging when nobody wants to hear you and thinks you’re crying wolf about your pain everyday.
How has your social and family environment reacted? Have your social or family relationships changed?
I was born with it so nothing has changed for me.
What things have you stopped doing?
Lifting heavy items, a lot of abdominal workouts. I was injured at work and found out I have little to no muscle mass and therefore it’s dangerous for me to strain.
What do you think about the future?
It scares me, but I’m hopeful for awareness and more discovery. I’m hopeful to find someone to help in the medical field.
So far, which years have been the best years in your life? What have you done during them?
I’ve had a lot of good years so that’s hard to answer. The past few years just exploring the world and learning more about my self has been quite a nice journey I’ve enjoyed.
What would you like to do if you didn’t have your condition?
Become a heavyweight champion haha. Just kidding. I’m not sure, I’d probably do what I do now but with more confidence.
If you had to describe your life in a sentence, what would it be?
Adventurous!
Finally, what advice would you give to a person in a similar situation?
Keep searching for answers. Never take no for an answer if you feel there may be something else. Make people hear you.
