Living with vision loss can often make one feel isolated and lonely. At the ADOAA (Autosomal Dominant Optic Atrophy Association), however, we’re working to build a community to combat this feeling. When a disease is considered rare, and doesn’t have a treatment or a cure, it can be easy to lose hope. But when we work together to fund research and spread the word about the rare diseases in our lives, we give power and a voice to the ignored and forgotten. And just as importantly, when we share our stories, we find common ground and new ideas and tips for living with vision impairment.
One of our board members Claudia Matheny, and her daughter Sophia, recently shared their ADOA story at a philanthropy event at Virginia Tech. Claudia was a member of VT’s Delta Gamma sorority, whose philanthropic activities have traditionally involved charities focused on vision loss. She was an active and passionate member of the chapter during her undergraduate career, but the true impact of this charity work wasn’t realized until she had a personal experience with vision loss.
Claudia’s daughter Sophia was diagnosed with ADOA. The diagnosis came after years of difficulty reading, tripping at school, and several doctors’ visits. Even after being diagnosed, Claudia and her family were led to believe that ADOA was a relatively benign disease. They were given virtually no information about what signs to look for as Sophia grew up, or the complications she may face in her life.
Claudia was nervous for her daughter and felt hopeless when specialists told her there were no treatments and nothing she could do. But they were wrong. Claudia and Sophia emailed, called and visited doctors all over the country, and even spoke to doctors in other parts of the world like Denmark. Claudia was also introduced to ADOAA, joined the Board of Directors, and has been helping raise money for medical research and awareness about the disease.
The Matheny’s eventually settled on a specialist in California, which Sophia says is both exciting and challenging. Her friends are jealous that she gets to skip school and travel to the west coast, but they don’t understand that means hours-long appointments, not being able to read, and mountains of makeup school work back home. There are often long, difficult days because of ADOA, but she is also extremely optimistic.
The most important thing to Sophia is that she knows she has family and friends that love and care about her, and who will be there to help her no matter what. She’s confident that when she shares her personal journey, she’s helping at least one person feel a little bit less alone.
To view a short clip of Sophia's speech, click here.
Do you want to share your story with the ADOAA community? Contact us today.