Making Connections and Finding Camaraderie at My First CMTA Conference

“Maybe there will be others at the conference who will commiserate with me,” my sister said as we sat among our bags at gate B6 in Detroit’s Metro Airport.

Despite being prechecked by the Transportation Security Administration hours earlier at John Glenn International in Columbus, Ohio, my sister still had to suffer through a pat-down because of the ankle-foot orthoses (AFOs) that she wears for her Charcot-Marie-Tooth (CMT).

Though it’s one of the most common inherited disorders affecting the peripheral nervous system, it’s rare to encounter other CMTers in everyday life.

That was one of the reasons we were there — waiting for the plane that would take us to St. Louis, Missouri, the location of the Sept. 7 CMT Patient/Family Conference hosted by the Charcot-Marie-Tooth Association (CMTA) — we wanted to find connections and camaraderie with others like us and people who could relate to some of the headaches that we endure.

It was our first CMT conference, though the CMTA has hosted several conferences every year for more than three decades. This year it held one in April in Detroit; another is scheduled for Nov. 2 in Atlanta. These conferences help CMTers stay in the loop with the latest research, as well as connect with medical experts who specialize in the disease.

Laurel Richardson, CMTA’s director of community outreach, told me that though the stated mission may be one of education, she likes the sense of community the conferences provide. Speaking with me by phone before the conference, she said: “Primarily, we are putting this together for education — it is indeed an educational program for community members.

“But for me, the true benefit, in addition to providing education, is providing a sense of community. To let people know that they aren’t alone, that there are others with CMT, and there are doctors who specialize in CMT.”

My sister and I were in good company among people who could understand the hassles of going through airport security with AFOs, the embarrassment of tripping over flat surfaces, and how meaningful it is to know that you aren’t alone.

I spoke to some fellow CMTers about their experiences at the conference, and they kindly allowed me to take their photographs. Here’s what they said:

Ann Lei: “My first CMTA conference. I loved connecting with fellow patients without the stigma of disability, where we are each other’s best advocates and resources for information and support.” (Photo by Young Lee)

Karen Smith: “I enjoyed the togetherness and camaraderie that is present at these conferences. And getting to know everyone.” (Photo by Young Lee)

Lonna Mahurin-Henry: “This was my first conference, and I was blown away. Dr. Govindarajan gave us some great tips for everyday living with CMT and introduced me to holistic wellness.” (Photo by Young Lee)

Meeting other CMTers and finding kinship in our CMT stories may have been the emotional high points, but the conference wouldn’t have had such an impact without the presentations from CMT experts.

We heard from various CMT specialists, each with a different perspective on CMT and united in their mission to treat the disease. It was an interesting experience for me to be at a conference where every topic discussed was essentially a different way of looking at an aspect of myself. In a way, it was almost flattering.

I do have some regrets, though. While I did get a chance to meet with many members of the CMTA and other folks from the CMT community, with such a tight schedule, some interactions did feel a little rushed. I hope to have more opportunities to chat and exchange more stories with our community at future events.

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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.