A Challenged but Beautiful life

By Yolanda, Primary ciliary dyskinesia, United States, June 28, 2019

My whole world

My name isYolanda, I am in my early 30’s and living with PCD. I was born prematurely and started my life in ICU at 9days old. I struggled to breathe and stay healthy the first several years of my life, spent most of my months in the hospital. The Dr.’s could never tell my parents what was wrong with me and why I was so sick, they always said I’d grow out of it.

At the age of 9, after spending years sick, in and out of hospitals and Dr. offices all over California, we had found an ENT in my hometown who finally could diagnose me with my disease. It was a very sad day but at the same time, a great day. From that day forward we were able to understand my body and start treatments that could help my most and life. The years of infections had taken a toll in my lungs and ears, I suffered hearing loss and lots of scaring in my lungs and ears. I have had two Mastoidectomies on each ear, plus many other ear and sinus surgeries. I now wear hearing aids, I was diagnosed with shingles at the age of 17, have severe migraines monthly, as well as severe shoulder issues on one side.

My husband and I had to do IVF for the birth of our beautiful and healthy son, however now I suffer from sciatica back issues after the birth of my son. I was unable to work several years ago after becoming very ill several times out of the year, it’s hard to keep a job if you're not there. I was blessed with being able to stay at home with assistances and try to stay away from people during sick season.

For the most part I am fairly healthy and can live a very normal life, my best health is in summer months. I am blessed to be here and God knows, I have fought since birth to be on earth! I cherish every day and every moment with my family but sometimes I feel like I was given the short straw in my life and I get down, but it’s never for too long. I have several treatments I have to do daily and take daily medication to keep my body in good health and I have a great family and friend support system. If anyone ever wants to talk or share stories or even vent for a little while, I am here for them. I’m still at hopes that one day, they will find a cure for this disease and people won’t be limited in life. God Bless us all and all who fight everyday to stay healthy.

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.