I wish I could remember more of what I saw and heard that day. I sat in the back of a midsize hospital auditorium and listened to doctors and scientists and a representative from Little People of America talk along a bank of microphones. The sound was crackly and hard to hear. There was a PowerPoint presentation and slides of neighborhoods where LPs had lived and grainy pictures of carnivals and circuses where LP families had appeared in the 1930s and 40s. They played video clips of people with achondroplasia who spoke of a strange subversive anguish: Yes, a genetic disorder was being eliminated, and that was a good thing. But at the same time, their world, their culture, was also being erased.

XLH is rare enough that I was well into adulthood before I met anyone with my condition. I was contacted by an early incarnation of the XLH network. We arranged to meet in a big cavernous restaurant in a strip mall just outside Baltimore. I remember we ordered Caesar salads and large goblets of iced tea, and then someone ordered a glass of wine, and the rest of us did, too. We spoke of our lives, our careers. Some like me had chosen to have children; others had not. One woman I became quite close to, Elaine — a scientist by training — said she could not imagine having children because she felt she and her sister, who also had it, had suffered too much. She was a generation older than me and had not been given vitamin D2 as I had, so she stood about 4 feet 6 inches to my almost five feet. She laughed and said, “Even this makes a difference, and I can tell you my fashion statement is long skirts whatever the occasion.”

I don’t know that you could make an argument that we, as a group, have much of a culture in common, but we have had so many similar experiences. Most of us wore braces, spent our childhoods in and out of orthopedic units and had bone surgeries. We had learned that looks do matter to the world, even, or maybe especially, when people swear they don’t. Yet we had also had sweet, complicated and often triumphant lives. Meeting other people with XLH, I experienced a bond that was nearly primal and hard to explain. The one and only time my family and I encountered another family with XLH outside my support group — in a random encounter in a local Target store — we recognized each other as fellow XLHers instantly and proudly, and left each other in a flurry of high fives.

Lately, I find myself recalling when my children were small, and how XLH was so woven into our lives: dispensing their medicine many times a day, going from the small town where we lived in southern New Mexico to see the specialist in Albuquerque, and mostly the pep talks we all gave one another about how XLH would not stop us from being anything in the world we might want to be, how we knew people thought we looked weird and sometimes treated us badly because of it, but those people were wrong.