Greta Geiger knows living with a rare genetic condition can be a challenge. It also can shape your journey in unexpected and profound ways. A graduate from Millsaps College, where she received an art scholarship, Greta is both an award-winning sculptor and an aspiring genetic counselor pursuing a Masters in Medical Genetics and Genomics at Tulane University. Greta also lives affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, one of many types of ectodermal dysplasias. Through her story, we glimpse a life of strength, creativity, and a drive to help others better understand their own genetic conditions and pathways to empowerment.
Childhood Struggles and Early Realizations
Greta’s journey of living with EEC began with a surprise at birth. Her parents were unaware of her condition until she was born. This led to a host of medical challenges in her first days of life. After kicking through her mother’s amniotic sac, Greta was born two weeks early and underwent immediate surgeries to address issues like a breathing obstruction caused by choanal atresia and non-functioning kidneys. The complications of the delivery led Greta and her mother to be separated for the first week of life as they both went through life-saving medical procedures. These early struggles set the tone not only for a life filled with medical procedures and hospital visits, but also one of resilience and connection.
“I’ve had over 25 surgeries,” Greta shared, discussing her early life. Her parents, however, were determined not to let her condition define her. Instead, they supported her with love and normalcy, something Greta believes was crucial to her well-being. This kind of support shaped her identity, helping her grow into the confident and ambitious person she is today.
The Impact of EEC on Daily Life
One significant symptom of EEC that Greta deals with is difficulty regulating body temperature, especially in hot weather common to her home in Louisiana.
“I don’t prefer to go in the heat,” she explains, recalling a summer day when temperatures soared to 115°F, leaving her struggling while outside with kids. Her body’s inability to sweat properly makes such extreme conditions unbearable.
She also faces dental challenges living with EEC, a common issue for people with ectodermal dysplasias. Greta has undergone numerous dental surgeries. After eight sets of implants, five different dentists, and more than $100,000 in medical costs, Greta opted for porcelain teeth. What she jokingly describes as her “toilet teeth,” porcelain implants are designed to last up to 30 years and reduce future procedures. The cost is still significant, only offset by participation in case studies.
“I’ve had to deal with a lot of issues with my teeth,” she says, “No one ever told me that I can get basically permanent teeth.” But through all these hurdles, Greta continues to push forward with optimism, determination, and new teeth.
Overcoming Bullying and Finding Strength
Like many children with visible differences, Greta experienced bullying growing up due to her cleft lip, thin, blonde hair, and missing fingers.
“I was bullied a lot in elementary school,” she shared. This led her to become more reserved in social situations. Nevertheless, she has continued to find comfort in close relationships with family and friends. Her family especially has been a rock throughout her life. They supported her as she learned to ride a bike and knitted homemade, custom gloves for the winter.
“I think that’s what kids deserve,” she said, “to be treated like they’re normal kids.”
Despite the hardships from living with EEC, Greta is an accomplished artist.
“I’ve been an artist since I was a kid,” she says. She even won an art scholarship to Millsaps College and took home Best in Show for one of her sculptures. Acrylic painting has become her favorite medium due to its quicker drying time compared to oils. Creativity has provided Greta with an outlet to express herself and cope with the challenges of EEC.
Becoming an Advocate and Genetic Counselor
Greta’s medical history and personal experiences have influenced her future career choice—genetic counseling.
“I want to help people like me,” she says, reflecting on how little she understood about her condition growing up. She hopes to provide patients and families with the support, information, and options that were often missing from her own journey.
“I think I would be good at explaining it, because I’ve lived it,” she added.
Her passion for biology developed early.
“I took three biology classes in high school and loved it,” Greta recalls. This interest grew alongside her desire to help others. She began working with children, including those with autism, in applied behavioral analysis (ABA) therapy. While Greta enjoyed the work, her heart is now set on becoming a genetic counselor. She wants to guide families through complex medical journeys, like those faced by individuals affected by ectodermal dysplasias.
Advocating for Ectodermal Dysplasias
In addition to her artistic and academic pursuits, Greta is passionate about advocacy. She participated in an Advocacy Day on Capitol Hill in Washington D.C. this summer, representing the National Foundation for Ectodermal Dysplasias (NFED), meeting with lawmakers to push for the Ensuring Lasting Smiles Act (ELSA).
“I was nervous at first,” she admits, but the experience left her feeling empowered and ready to continue her advocacy work in the future.
“Thankfully, we’ve always had really good insurance for medical stuff,” Greta said. “I’m sure it was expensive [for my parents], but not as expensive as it could have been.” Greta knows this is not the case for all people who are affected by EEC and other types of ectodermal dysplasias. She believes in pushing for policies that will benefit not just herself but future generations.
“It takes so long to pass a bill,” she affirmed. “[ELSA] probably won’t help me, but it’ll help people after me.”
Greta knows these advocacy days are not the only ways people like her and the wide network of the NFED work to support individuals, families, and others affected by ectodermal dysplasias. The NFED offers significant resources to aid families in the navigation of complex realities, whether through financial resources, treatment options, online discussion groups, an online library of articles, school advocacy kits, and tools for talking with insurance providers.
Looking Toward the Future
Greta’s story is one of perseverance, creativity, and a deep desire to make a difference. Her experiences living with EEC have shaped her into a compassionate, thoughtful individual, ready to guide others through their own medical journeys. As she continues to pursue her dreams of becoming a genetic counselor and advocate, even starting a family of her own, Greta’s journey showcases the power of resilience and the importance of advocacy for individuals with rare genetic conditions like EEC and other types of ectodermal dysplasias. Whether she’s creating beautiful art, advocating on Capitol Hill, or helping families understand their genetic diagnoses, she’s dedicated to making the world a better place for those who walk similar paths.
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