Awareness Advocates of the Month: Amy Semaya and Jessica Akar
From June 2008
What could be a more delicious way to raise celiac awareness than eating gluten-free cupcakes? Amy Semaya and Jessica Akar couldn’t think of one and were anxious to get the word out, so on May 18, 2008 they hosted a Cupcake Party to benefit the National Foundation for Celiac Awareness (NFCA)! In doing so, they educated more than 30 of their friends and family members about the life that Amy leads.
For several years, Amy had no idea what was wrong with her. As a teenager and a young college student she would go out with her friends to eat, but had to return home immediately following the meal, as she was too sick to continue the evening. Her friends would sit with her, as she was unable to move, staring at her stomach and wondering what was wrong.
It took several doctors and dietitians, who repeatedly put her on high fiber diets, before a friend suggested that Amy might have celiac. She visited a new doctor, tested positive for the disease and started the gluten-free diet. She started feeling better immediately and her friends were relieved!
Amy was finally healthy!
As this sort of story is all too familiar to those of us in the celiac community, we know that a positive diagnosis was not the end of it. Amy had a long and difficult road ahead of her. At the time she was diagnosed she was living in her sorority house, which had a chef who did not understand Amy’s new dietary needs. Today, she lives in Manhattan, a city that thrives on its restaurant scene and relies on take-out menus. Amy has found that she can be healthy but many times it means mundane and routine meals to make sure she is eating safe food. However, she is anxious to teach more people about celiac – she feels the more people that know about it, the more options will be made available.
Jessica Akar is Amy’s close friend who was there through it all and has become a main source of support. Jessica does not have celiac but says she spends so much time with Amy that she may as well. She is constantly on the lookout for new gluten-free products and restaurants with gluten-free menus – in fact, while we were on the phone to discuss this article Jessica interrupted to tell Amy about a new gluten-free pizza place she had just discovered! She is as excited about raising celiac awareness as Amy.
The 23-year-olds decided that the most enjoyable way they could teach all their friends about celiac was to host an NFCA Cupcake Party. As they started to put their guest list together they realized they had many more people they wanted to invite than would fit into either of their NYC studio apartments. So they found a community room at a local senior center and started planning! They wanted to make sure that this was truly an educational event and not just a party, so along with all the gluten-free food and refreshments, they also made sure they had plenty of materials about celiac, including NFCA’s “Do I Have Celiac” brochures.
On May 18th, Amy and Jessica’s friends and family gathered to sample gluten-free cupcakes and learn about celiac. Along with the cupcakes made from Pamela’s Products mixes, Amy and Jessica also had Redbridge gluten-free beer, Rice Chex mix and other gluten-free goodies. Out of the more then 30 people that attended, only one was diagnosed with celiac and few others knew anything about it. Most were excited and pleasantly surprised to discover that gluten-free food and beer could be good! All took home the brochures along with gift boxes with more gluten-free goodies that Amy and Jessica made as they promised to spread the word about celiac.
Amy and Jessica are pleased with their success but realize it’s only the beginning. Both think it’s important for people to learn about celiac disease so they can be diagnosed sooner. As Jessica said, “If Amy had only been aware about celiac earlier, all the hard times would have been eliminated.” Amy echoes her sentiments: “I’d rather other people not have to go through the same thing I did.” Both continue to be devoted to raising celiac awareness and said emphatically, “I can’t wait to do it again next year!”