Meet Peggy – Zambia

Hi, I am Peggy from Zambia.

I am ten years old, and I have severe epidermolytic ichthyosis (EI).
FIRST has been of help as I connect with others to know what other kids with the same condition are going through.

Unfortunately, many people in our world do not fully understand that ichthyosis is not a disease but a genetic skin condition which is not contagious. The stigma, myths and traditions associated with ichthyosis are not something to write home about.

Living with the condition comes with many challenges. Not that I complain, but I have missed out on most good things that kids my age enjoy. Things like going to the mall for an ice cream, going to play at the park, going to school, taking a normal walk without people staring at me because of the way my skin looks.

I can’t help but emphasize that we take it personally to educate our local communities about the existence of ichthyosis.

My day-to-day life would not have been easy without some people who have taken it upon themselves to help me. I don’t have permission from them to share their names but I am bound to. I cannot mention all of them one by one, but I will try and mention those that come to mind immediately.

In my mind, I have these wonderful people like Katie, Denise and Rebekah who do not tire from my endless journey. Not only have they been my source of spiritual strength, but they have helped me acquire the much needed creams and lotions for my severe skin. All this is at the expense of their own families. I love you guys.

FIRST -This foundation has helped in updating me and all other people living with ichthyosis through their informative data through their newsletters. “An ultimate authority on people living with ichthyosis voice worldwide.”

Helen Lill, of the EI Cure Project, has helped me understand what my condition really is medically and has time and again updated me on the research being done in finding a cure.

Les Avakian, you are a wonderful man. You chat and advise me on how to take care of my condition, while also being patient. We chat until we get tired in the wee hours of the morning.

Ichthyosis Support Group (ISG)- Where families share their personal experiences and I have largely benefitted and applied from the advice shared on this platform.
Lastly I would like to thank my family. You guys have been awesome. You all play your part, like in a movie, for my happiness. You have constantly drowned me with lots of love. With you near, I am not alone.

To my little brother King David, you will always be my partner in crime.
Caregivers and all people living with ichthyosis, always remember that you were born differently but are special in the eyes of our creator Jehovah.