I first discovered a growth in my skull after suffering seizures and dropping my newborn daughter, 14 years ago. I was diagnosed with Fibrous Dysplasia a year later. For the first 4-5 years it was rough. I battled depression and pain. But I never let it take me down. I have suffered many blows from divorce to tragic deaths of loved ones. In the end, I have started to battle back. I am happy, I am graduating in December with my bachelors in criminal Justice from the University of Missouri-St. Louis, and I took in my 3 stepchildren, who now live with us. My husband and I are trying to have another baby and he has gone back on active duty service. FD has not held me down, but made me stronger and oh so much more patient. I believe everything happens to teach us a lesson so that we can live our life better; FD has been one of my lessons! The greatest thing I have accomplished is hearing my daughter tell me I'm her hero and I am the strongest woman she knows!
I am 12 years old (turning 13 in June) and I have MAS/FD. Diagnosed at 3 years old, I always knew I had special bones growing up. Instead of sports, I play the quitar and take drama classes. Currently I'm rehearsing for the role of Mufasha in the production The Lion King Jr. MAS/FD doesn't define me and I'm a pretty happy guy. Like my family always says, "One day atta time". [❤] ️ www.rylansrhythms.com
Share your advocacy stories with us!!
My life started much like any other, running, playing etc. Around the age of four years however things would change, beginning with a series of minor accidents in which I broke my legs. Ordinarily such falls would only result in bumps, bruises and the occasional scraped knee or elbow, not broken bones. Eventually, I was diagnosed with McCune Albright Syndrome, a form of Fibrous Dysplasia. So began a whirlwind journey through more broken bones, seemingly endless reconstructive surgeries, struggles with depression, anxiety and rage, and most significantly to me, the total loss of vision, all related to the FD/MAS.
Though difficult, I like to hope McCune Albright Syndrome has made me a stronger and more understanding person. I cannot say what future challenges it will throw at me, but I am thankful for it as it's brought me to a life I would not otherwise have been able to experience. Most of the people I love, the things about myself I appreciate and my growing career as an author, are gifts I would never have had without MAS and FD.