- Charcot-Marie-Tooth Disease
- Interviews
Essa's interview
How did all start?
I suppose when I was a child from walking age I was no much more clumsy than the other children, either breaking or straining my ankles constantly. But we never knew the cause till much later in my life.
Do you already have a diagnosis? How long did it take you to get it?
It took 14 years since birth to get a diagnosis.
What has been the most useful thing for you so far?
Has to be my walking stick now days I feel without it I walk slanted or at least 85% I will at least face plant the floor.
What have been your biggest difficulties?
Stairs lmao. Sounds stupid everytime I look at stairs I think to myself how can something that looks so easy be so hard. Fatigue will kick in a few steps up. And my legs turn to jelly. Also uneven surfaces and places that have changed the flooring in half a room for some reason makes me feel off balanced.
How has your social and family environment reacted? Have your social or family relationships changed?
I go out much much much less than inside before it really affected me. Summer is always a better season due to the winter affects me more. But I hate cancelling days out especially since I have a 4 year old girl too. Would love just once to chase her around the park or even walk to the shops to buy her an icecream.
What things have you stopped doing?
going out to parties, enjoying social drinks with the girls every other weekend. Going out every weekend with my partner for date night. Walking in the beach, is now the hardest thing. Swimming I get tired to fast.
Also CLEANING I miss cleaning with a sponge and a bucket of bleach. And cooking by myself, n
What do you think about the future?
I don't really think about it, I mean I know it's going to come along obvis but I more think into the here and now.
So far, which years have been the best years in your life? What have you done during them?
Ooh it's probably when I was a teenager, no major issues with cmt I was free to do these social meetings with friends and family. No fatigue, no pains, no cramps. Although saying that when I was pregnant in 2013 with my daughter it's like cmt had gone with the symptoms I had nothing and not only that I didn't even feel labour nor my contractions!!
What would you like to do if you didn’t have your condition?
Run on a beach with my daughter play for hours and hours, let go of worrying if I'll be able to make it to a social event.
If you had to describe your life in a sentence, what would it be?
Just because my path is different, doesn't mean I am lost.
Finally, what advice would you give to a person in a similar situation?
Keep your chin up the most important thing is to remember that your friends and family understands you and why you cannot always be there. We are not failures in life. We stand proud in our hearts because we are warrior in this world.
