The definition of the word rare is something that exists in limited quantities, a hard to find gem. But when it comes to people living with a rare disease, it means someone that has something that affects fewer than 200,000 people. In some cases, rare diseases have become known as “orphan diseases” because drug companies are not interested in adopting them to develop treatments.
So as a 4’2″ woman who walks with crutches and sometimes 5-inch stilettos, I could either be considered a rare gem or an orphan, but I would rather be that hard-to-find gem that no one has ever seen before. This is why on Rare Disease Day 2019, I am in DC with the Rare Disease Legislative Advocates & the Everylife Foundation going to #ShowMyRare with my favorite stilettos on, showing the world that we all matter and deserve everything, no matter how rare we may be.
So how rare am I? One would say very rare on many different levels but mainly because I live with a disease called McCune Albright’s Syndrome. With only 5,500 people diagnosed with this disease in the U.S. and less than 8,000 worldwide, with no cure in the foreseeable future, one could say those with my disease are a gem or 1 in a million with a rare opportunity to show their differences to the world. Before I was officially diagnosed, I had some very rare symptoms including getting my period at 9 months, seizures at 12 months and I broke my femur for the first time at 18 months old. My life was anything but ordinary, but I never let my disability get in the way of how I looked at myself in the mirror. I am just like any other person, but with the help of two metal crutches that help me walk around. I can do what everyone else can do, but I’ll do it 5-inch stilettos!
Growing up, I faced a lot more challenges than the average child and as an adult today, every day bring something new. Everyone around me has always underestimated my abilities but I’ve always pushed myself. As a kid, I was determined to walk, play with my friends, socialize in all school activities. Today I’m sharing my voice with the world, sometimes through an inspirational speech or simply through everyday activism demanding that women and all people with disabilities have a voice. Despite a world that kept throwing the word, “no,” in my face, I choose to fight harder for myself and others like me. I just simply want to be me.
Today, I’m a consultant for Johnson & Johnson, give inspirational talks on behalf of companies and schools on why disabled people matter in and out of the workplace, while teaching them how to turn the invisible into invincible, Board President of the Fibrous Dysplasia Organization and proudly designing a line of shoes, called Unstoppable by Lauren Jae, that will accommodate sizes 3-13 where a percentage of the proceeds will go to research for rare diseases. With a size 4 foot of my own, I know the struggles of finding a stylish pair of heels. I wanted to make a line of shoes that were accessible to all women, no matter what size shoe they are. My proudest moments are when I demonstrate how I’ve made it through the storm by getting on stage and showcasing my voice to corporations, schools and most importantly parents and teenagers.
My rare disease does not define who I am. It’s a part of me and I’ve learned to live with it and overcome the challenges that come along with it, but I refuse to let it hold me back. I was the one who began to tell the world, “YES.” I can do this. I will persevere. I am unstoppable and I will continue to show my rare.