Pick a point in your life and write about your challenges or successes.

Annalie, our 9 year old daughter, loves school, her family and friends, dancing, playing the piano, pushing her siblings' buttons, and so many other things. Annalie is creative, artistic, stubborn, and independent. She feels she is strong in math, but she has also developed a love for reading. Annalie has dry, flaky skin, but that is such a small, tiny part of our amazing little girl.  When Annalie was born in 2009, we had never heard of ichthyosis. Annalie was about six months old when we were told by a dermatologist that Annalie had ichthyosis, so of course we did what any parent would do after leaving the doctor's office with an unfamiliar diagnosis, we searched the Internet to figure out the meaning of the word that would label our daughter for the rest of her life.  At first that label, ichthyosis, was all I could focus on and worry about. My first thought when meeting someone new would be, "What are they going to think about her skin?" It took me several years to finally break free from my constant worry about the thoughts of strangers. When dropping off Annalie at her first dance class of a new school year, I introduced Annalie to her new teacher, gave her a hug and a kiss, and left the studio to run some errands. I broke down in tears in the middle of the grocery store when I realized that I did't even think to tell Annalie's new teacher about her skin. My worries of acceptance and understanding had been pushed to the back of my mind, and I was finally able to focus on Annalie, the little girl, not just the label that described her dry, flaky skin.  Annalie is bright, confident, funny, and I am so proud to be her mom. She has taught me so much about life and acceptance, and I cannot wait to see the amazing things she will accomplish in her lifetime. I know she will do great things, and I will be her biggest cheerleader as she goes out into the world with a kind heart, independent spirit, and the confidence in knowing that what truly matters most is not what you see with your eyes, but what you see with your heart.

How has FIRST impacted your life?

We have met so many wonderful people through FIRST, and I do not know what I would have done when we started this journey without the support and advice of other parents and individuals affected with ichthyosis. The information provided by FIRST was instrumental when educating administrators and teachers when Annalie started school. The advice and support through FIRST's many Facebook groups has helped us tremendously as we continue to navigate through new milestones and stages of life. I am so thankful for the connections we have made through FIRST, and I appreciate all that they do to bring awareness, acceptance, and support to our community.

What's Your Story? We'd Love to Hear It!




« Back to Meet Our Families

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

Share This Page: