Shannon and I know each other through DeDe. She has an eight year old daughter called Lauren who has Harlequin Ichthyosis. DeDe’s son Evan is pictured with Lauren below. Shannon writes about the gift of community spirit that comes with being affected by Ichthyosis.
1: A unified body of individuals
When asked to talk about my experience with Ichthyosis, “Community” is one of the first words that now come to mind. That has not always been the case, however. Earlier in my journey, words like “fear” and “isolation” were more often expressed. “One in a million”, when dealing with a life threatening condition is not unifying. “Extremely rare” is not comforting. Even with the benefits of our world renowned medical system here in Boston, our doctors were referencing text books as they struggled in their care of our new baby. No one was able to provide that sense of community. That “I know” and “I’m here”.
That all changed with one phone call made in the Fall of 2004. A call, I admit I had avoided making until that day. That ordinary day, with my baby sleeping soundly, I picked up the phone. I dialed those twelve numbers that would change everything. On the other end of the line was Jean, of FIRST, The Foundation for Ichthyosis and Related Skin Types. “You are no longer alone” was what she said and in that brief exchange it was as if she had reached through the phone and had given me a reassuring hug. Jean was able to put me in touch with Patti, whose daughter Hunter we all know and love, and an instant connection was made. Hunter and Lauren are pictured below.
I began trolling the bulletin board at Ichthyosis.com and found other parents dealing with the same questions we were. “What creams are you using?”, “What is your favorite scalp treatment?”, “Do your children scratch?” That is where I first met Lisa, Suzanne, Jennifer, Morgan, Kim, and many others, all mothers just like me with kids just like mine. We were indeed becoming a community.
In 2006, our family attended our first FIRST Family Conference in Atlanta. Completely exhausted from the day’s travels with our now toddler and needing to wait for our room to become available, we decided to explore the hotel and convention center. It was in the pool and spa that we first encountered Craig, Sarah and their little girl Ema. It was their first conference as well and we quickly became friends. It was only yesterday that I heard Sarah’s familiar voice on my phone’s answering machine and as always it made me smile.
Erin, Chip and Ethan we met later the next day. Over the course of the weekend, Erin and I spent all kinds of time sitting on blankets in the convention foyer, with our kiddos both of whom were too young, at least in our minds, to be left with the provided child care team. Those informal exchanges about life and our day to day routines are priceless memories. Our little community was growing.
“What kind of Ichthyosis does your baby have?” followed by “She looks good” is what I heard over a booth partition in a Chicago hotel restaurant where we were attending our second FIRST Family Conference in 2008. My introduction had been made to Ana and her amazing mother Jennifer. The girls chased balloons up and down the hotel lobby, while Jennifer and I talked. They would travel to Boston not long after that day, where we would spend a sunny afternoon together in the city making plans for our trip to their part of the country.
It was in Orlando at the 2010 conference that I heard news of a baby having been born in our neighboring state of Connecticut. De De had her own journey and when ready made her own phone call which would link us together forever. We were honored to attend Evan’s 2nd birthday and were welcomed by his extended family. We only just returned from a sleep over where Evan and Lauren colored pictures for De De sister encouraging her efforts in the Boston Marathon, only to then share in the tragedy of the bombings in a city we both called home at one time. While I am old enough to be her mother, I consider De De a sister, unified only in part by Ichthyosis.
2012 and our little girl was growing up. It was in Denver that I realized that her community was growing too. She couldn’t be contained, jumping from one friend and activity to another. She wanted less to do with us and more to do with her new friends and her new freedom. I knew that these were kids that she would shares brief email messages of “How’s school?” or “What’s your favorite One Direction Song?” or “See you in Indianapolis”. I was able to meet Leandra and Lauren and knew our community was strong.
With facebook, blogspot and other social media, our community has indeed grown. Thanks to the efforts of Kristi, De De, Courtney, Jane and of course Carly, our community is being represented to the world and our shared goals are being expressed. Their pages are often dedicated to Ichthyosis, awareness and research. Our community has no single country, no identified boundaries. Information is shared with a click of the mouse. Comfort is given via messaging or text. Hugs have gone virtual.
I want to thank Carly for letting me borrow this forum and of course all the efforts made by FIRST. Please support their efforts by visiting them at www.firstskinfoundation.org.”
For Ichthyosis and appearance diversity resources, click here.