Advocating for Her Own Rare Disease: Andra’s Story
After being diagnosed with a rare endocrine disease, Andra Stratton was dismayed to find little information about the condition. So she started a foundation for others also affected and seeking answers.
Andra Stratton was 37 when she received a diagnosis from her endocrinologist she wasn’t expecting: familial partial lipodystrophy.
“I Googled it, and the only info that came up was HIV-associated lipodystrophy, which was completely different,” Stratton recalls.
That knowledge gap underscored her concern: a lack of available resources and information for the average person on the rare disease she was facing.
Lipodystrophy is a group of rare diseases that share in common the selective loss of fat tissue from the body. Patients affected by the diseases generally have severe insulin resistance, high lipids in their blood and fatty liver. The condition highlights how important fat cells are to regulating a person’s metabolism.
Shortly after her diagnosis, Stratton was asked if she wanted to share her story with a pharmaceutical company working on potential therapeutic treatment options.
It turned out she wasn’t alone.
“The company had brought in a patient advisory committee,” says Stratton, now 44. “When I met these other patients, I thought how together we were so powerful and knowledgeable about our disease. We really wanted to share this sense of community and connect with patients across the world who were experiencing lipodystrophy, too.”
Spreading the word
Stratton left feeling a personal calling to create the community she was searching for when she was diagnosed in 2011.
“I teamed up with other patients, and we were fortunate enough to have a consultant work with us to create a formal foundation,” Stratton says. “We went through the paperwork the government requires and really thought about what a mission should be for this group. We planned out how we would work with the community and what types of activities we thought would be beneficial.”
Soon after, their foundation, Lipodystrophy United, was born.
The mission is twofold.
“We all agreed the biggest challenge we face is awareness,” Stratton says. “The majority of physicians haven’t heard of lipodystrophy before. You spend so much time explaining to the physician what your disease is, and the medical community in general is not equipped to help these patients.”
Support among patients is the other main goal of the foundation.
“It’s so easy for this community to feel isolated or alone,” Stratton says. “We wanted Lipodystrophy United to help ease the isolation and fear that come along with the diagnosis.”
A special advocate
After getting the foundation up and running, Stratton learned about endocrinologist Elif Oral, M.D., at the University of Michigan and her pioneering work in lipodystrophy.
“I consider Dr. Oral one of the world’s best lipodystrophy specialists,” Stratton says. “Her overall treatment of the patient is incredibly unique. She has the research perspective, but her bedside manner and caring and nurturing of each patient is unlike any other lipodystrophy specialist.”
Oral has since become a champion for the foundation and helped boost its collaborative strategy.
“All of us patients try to get together regularly and identify trends and daily burdens we are experiencing,” Stratton says. “We then share these with doctors who are champions for our foundation, like Dr. Oral, in hopes they will lead to even more discoveries and trends in the disease in the future.”
Adds Stratton: “The doctors have included me in the majority of their global meetings on the subject, and they trust me to bring them the patient voice, especially as patients as a whole. They may only see a few patients with the disease, but I can bring them the voices of many from across the world.”
The foundation participates in several other activities each year, including Rare Disease Week at the U.S. Capitol in Washington, D.C., where foundation members advocate to legislators for an increased understanding of the challenges of lipodystrophy and the rare disease community at large.
Stratton says the foundation’s website has been the best tool for creating and harboring the community.
“The best feedback I get is when I receive a message from a patient who says: ‘I just got diagnosed and I went to your website. I felt so alone. I can’t explain how happy I am to find this organization,’” Stratton says. “I always feel like we’ve accomplished our goals right there.”
United in gratitude
Stratton says the foundation recently celebrated its largest accomplishment to date: nominating Oral for a worldwide award.
“I’ve been a large participator in Global Genes activities,” Stratton says, in reference to the patient advocacy organization that provides training and education on behalf of the rare disease community.
While attending a Global Genes summit, Stratton noticed awards were being given to individuals who were, as she puts it, “truly heroes in rare disease.”
Nominating Oral for the 2016 Rare Champion of Hope Award was a no-brainer.
“It just really resonated with me,” Stratton says. “I’ve seen Dr. Oral go above and beyond for her patients, so all I did was let the community know that this nomination was open.”
An overwhelming number of patients in the community agreed.
“Patients who haven’t even seen her for care, but have heard about her, nominated her because they feel like having a physician like her in our community gives them hope,” Stratton says. “I even got a call from Global Genes saying they received an overwhelming amount of letters nominating her.”
Their work paid off: Oral won.
“This was the largest honor for me,” says Oral. “To be recognized by the patients whose valiant fight I watch in awe every day. The cause is bigger than life itself and any one individual. Also, it was truly inspiring to see the other rare disease patients, families, researchers, advocates and doctors.”
Beyond the celebration, there is still plenty of work to be done.
Stratton says the foundation will continue to be a place where those with lipodystrophy can come for support and information.
“We’re just trying to make the path easier for those coming behind us.”