Reflecting on FSHDselfies

By Mia Archuleta, Granbury, Texas

I have been thinking about people wondering exactly how the FSHDselfies have brought awareness to FSH dystrophy. Here are just a few examples of my journey since posting them.

I attend a Bible study group that I absolutely love. In the year that I have been there, everyone has welcomed me with open arms. It was a little odd because no one really saw me as “the girl in the chair.” They have always seen me as Mia. I tend to be an open book, but the subject of FSHD never really came up. No one felt that they couldn’t ask me why I was in a chair, they just never thought it was necessary because it is just a part of me, like a pair of eye glasses, or hearing aids or any other assistive equipment.

When I began posting selfies, a lady at Bible study noticed that it concerned FSHD. She asked me about it and through the course of conversation, she realized that FSHD was exactly what one of her previous students was living with. She mentioned the girl’s mother and over time I lost track of the name and forgot to do a Facebook search. Just this last week the mother, Angela Jackson was added to this group!! What a small world. We are trying to arrange a lunch date, waiting for the rain to stop so we don’t all end up a soppy mess. I cannot tell you how excited I am that with the post of a simple selfie, I will be making contact with another FSHD family. We live in a small town and it’s encouraging to know that someone else will understand the challenges unique to FSHD.

Again, at Bible study, I have a friend going to school to become a physical therapist. She is just in the beginning stages of her education, but has already begun to call me when she is writing research papers. At some point she wants to be able to present a paper on FSHD. She is also excited that when the time comes for hands on lessons, she would like me to be part of her education as she learns what will work and won’t work for my particular needs. She had never heard of FSHD until I posted a selfie and now she follows the FSH Society page and shares my info with everyone she thinks may benefit.

One more awesome thing about the selfies was when I had strangers contacting me on Facebook after my son’s band sent out the call for their fans to post selfies. Not only that, but one fan has a fanbase all of her own and sent the word out in Colombia. It was amazing that these people were making contact and sharing research information in hopes that it might help me. Of course not all of the research or info is up to speed, but it meant the world to me to know that strangers were getting to know what FSHD is. One of the fans was the stepfather of a disabled young man. I am sad to say they they were all killed in a tragic car accident a few months ago. It touched me so deeply that even in their quest to make life normal for their son, they took time out to learn about my journey.

You know the old saying, “You tell one friend and one friend tells one friend?” That is how the selfies are getting awareness out. If people have never heard of FSHD, and don’t see the physical effects of it, then they are not going to help in funding research. If they can connect a face to the disease, they are more likely to donate and help us find a treatment and cure.

So what if I have a crooked, goofy smile and round belly? That is who I am. I can choose to close myself off and hope no one notices or I can share and bring attention to the effects FSHD has on my body. It may crush my physical appearance, but it will never crush my spirit.