For many, being diagnosed with any disease – let alone a rare disease – is understandably devastating.
Many have described managing their new lives as learning a new language or moving to a new country and having to learn a whole new culture; there are new rules, new limitations, new accommodations that can be a struggle to grasp. For some it comes a little easier; for others, it’s a major struggle.
And here at Patient Worthy, we get the privilege of listening to and sharing so many patient voices who embody that struggle in so many wonderful and inspiring ways.
Meg Storie is one of those voices we want to share today!
Meg is living with Treacher Collins Syndrome, a condition in which the cheekbones and jawbones are underdeveloped. Those with this condition have very small, or partially absent, cheekbones and notches in or stretching of the lower eyelids. Hearing loss is also associated with this syndrome.
Though these characteristics are very physically prominent, – all those living with TCS were born with it, so it’s always been a part of their lives.
In fact, Meg came to terms with her condition quietly, over time.
“I don’t recall that day when I realized I had it. It just gradually happened over time. I just remember being in elementary school and thinking, “I look different.” But I didn’t feel ashamed.”
In fact, the only time Meg can recall feeling ostracized had nothing to do with her TCS, but rather something much more relatable and mundane.
“When I was in 5th grade, I started a new school and during my early days there, I remember feeling like everyone was watching me. I felt like they were looking at my syndrome. But soon I came to learn – it was because I was a newbie!”
Meg does recall feeling reluctant to go back to school during this time. She felt self conscious and out of place, like we all do in new surroundings. She wanted to return to her old school, but her mom made her stick it out – and once she did, it was smoother sailing!
Meg understands that children and adolescents living with rare diseases can have a particularly difficult time, which is why she focuses a lot of her advocacy work on helping youth and young adults.
“I have been part of Children’s Craniofacial Association since 1994. I have met a lot of families since then. I’m part of the CCA adults and alumni group with others that have craniofacial syndromes. We are veterans and role models for children and their families. We give them hope and the support they need.”
Furthermore, Meg has also been speaking to classrooms all over the country as a guest speaker and “real life Auggie” – a nod to the novel and film “Wonder” that tells the story of Auggie, a middle-school aged boy with TCS. She tours classrooms after the students read the book, taking their questions and sharing her story.
For Meg, it’s been such a treat to take questions from young, inquiring minds about TCS, and it’s been incredible to be able to, as Meg puts it, “open students’ minds and teach kindness” by letting these students meet and interact with someone they ordinarily would not.
It’s an opportunity to deconstruct “otherness” that gets in the way of empathy, understanding, and ultimately bonding in the many ways we are more alike than different.
This is a great service Meg is doing not just for the rare disease community, but for humanity by teaching kids kindness and compassion.
And Meg continues to be an advocate for herself and for others; again, deconstructing the ways others perceive her as “different.”
“There is one misconception that my weight seems to stand out more than my other TCS characteristics. It is common, but not everyone with TCS is naturally thin. Having a small airway and underdeveloped jaws may make it tough to eat big meals, but I do eat and love to eat. I even consider myself a foodie!”
You can count eating as among her favorite hobbies, including gardening, Halloween festivities, movies, and hiking with her husband.
In fact, Meg has the cutest story about meeting her husband.
It was summer of 2007 and I walked over to Cup O Joe, a local coffee shop in a town I grew up. It was a good iced mocha kinda day! I noticed David at a table. It was an awkward and quiet conservation at first, but he somehow asked me out!
And they never looked back! Wow, Meg makes it look so easy! Why can’t I find someone at a coffee house like that?!
Meg exemplifies how life can go on just swell, even while living with a rare disease. Just like learning a new language or culture, there may be some growing pains – but ultimately, the reward is sweet – like a good iced mocha.
Meg’s parting words of wisdom:
Focus on your child’s personality, embrace her or him. All I can remember as a kid is that my mom and aunt adored me and loved seeing who I became; they still do. To them, I was – and am – their artist, ballerina , girl scout, avid reader, TV junkie, and more.
