- Nail-patella syndrome
- Interviews
Mama_Mel5's interview
How did all start?
Born with NPS in 2006
Do you already have a diagnosis? How long did it take you to get it?
Yes I am diagnosed with NPS, my pediatrician noticed I had to knee caps when I was 2 years old.
What has been the most useful thing for you so far?
High heel shoes or any shoe with a heel or wedge bc I walk on my toes and it hurts my feet and legs but when I wear high heels its like wearing slippers for me bc then there’s no strain or pressure on my feet or legs. High heels for me is like slippers for you. It’s my normal.
What have been your biggest difficulties?
Walking, standing for long periods of time, my feet will burn and ache and my legs will too. Also my elbow hurts and my teeth no matter what I do I can’t get them white like I want bc my enamel is transparent it’s so weak, so no matter how much I brush or floss or use whitener my teeth are like transparent and have yellows tinge I hate it it bothers me so much.
How has your social and family environment reacted? Have your social or family relationships changed?
Nope my family is extremely supportive.
What things have you stopped doing?
Walking long distances, I can’t stand for more than like 3 minutes I’ll start getting dizzy.
What do you think about the future?
I’m gonna succeed in whatever I want to do because I’m awesome.
What would you like to do if you didn’t have your condition?
Run around and play all the time and smile a lot. Not be shy and go and make friends.
If you had to describe your life in a sentence, what would it be?
Physically and emotionally painful due to the NPS, but also HAPPY AND FUN.
Finally, what advice would you give to a person in a similar situation?
Find other people with ur disease become friends and go thru it together, it will make it easier and U will form a bond for life.
