A Reflection Of My First Week in RARE Experience

All of these words represent how my experience at Week in RARE has been so far. I want to be vulnerable for a minute to express what work in the rare disease community means to me.

My entire life, I knew I was different. Especially after being old enough to understand my diagnosis of MHE, I knew that my life would look different than the average person or kid’s. But for the longest time, I hid away — more so after my arm surgery, when my first bit of scarring would be here to stay. I didn’t always disclose my disability to friends or other acquaintances. In fact, I would go so far as to say I didn’t have a disability because of my “ability” to function in a normal day’s setting. That wasn’t always the case, though. I had to be careful of my bones. I didn’t skate, climb, dance, or was as active as others. I tried not to let that bother me, but deep down, I wanted to be “normal.” I didn’t want to have limitations. But, they were there, and sometimes prominent. When people would as me about my scars or the swing in my leg, I gave them the short of it: “I had surgery, and this is just my reality.”

Kids in school asked me why my leg swings. My first boyfriend told me that he could help “fix me” with physical therapy. & after I met my husband, the idea that I would want kids who could possibly inherit my condition came into play, and it was suggested by others that we didn’t pursue raising a family. Each instance of questioning — and suggestions of how I could possibly be okay with the way I am — hurt deep down. It made me feel as if I would always have to defend myself, and that I could never find my place or best way to describe me.

Finding and joining the Global Genes team has been one of my biggest blessings in discovery of my journey of establishing my self-worth and purpose. Sure, I’m good at writing and social media — it’s my passion. But I knew that I always wanted to make a difference + talk to those in media in a way that inspires them & makes people take action. Look for results. Be interactive with the resources in front of them. I wanted to make a difference in the non-profit and healthcare community for those who may also feel lost or alone, just as I have off and on throughout my life. Now, with Global Genes, I have not only been able to pursue my passion, but also find the community and collaboration that teenage me wanted so bad; and not even in the way I imagined it. To finally embrace and take part in the rare disease community that I tried for so long to hide away from has been incredibly freeing and emotional. Especially now that I have a child — with the possibility that they may have the same disease as me — I carry on the important role of advocacy. I never want them to feel the way I felt. I want my child to know that people are rallying for them, if that’s the case, and only view them as an awesome kid. I want to give my child and others like me a platform; a voice. And Global Genes has allowed me to do just that.