LITTLE ROCK, Ark. – One local doctor is using social media to help people suffering from rare diseases both locally and around the globe.
Dr. Jerad Gardner is a dermatopathologist and bone/soft tissue sarcoma pathologist at the University of Arkansas for Medical Sciences (UAMS) in Little Rock.
He says his ways of research was once seen as a little unconventional because he used social media as a way to help gather medical data and insight from patients living with oftentimes some of the rarest of diseases.
“I think this is the way forward for rare disease research because now if you have a rare disease you can go on Facebook and start a group and other people around the world will start to find it and pretty soon you will have the biggest group of those patients in the world bigger than any of those cancer center,” explains Dr. Gardner.
With more than 20,000 followers on Twitter and over 30,000 followers on Instagram, Dr. Gardner is being seen as a pioneer in the way he incorporates social media with the medical field.
“If we look as doctors, as teachers, as educators, at the things that we do. The way we teach, the way we research, the way we learn, the way we share information – social media doesn’t replace the old way, but it helps us do it bigger, better, faster, stronger, more powerfully than we ever could have done it before,” he says.
Dr. Gardner became a member of a closed Facebook group of people living with (or at one point had) dermatofibrosarcoma protuberans (DFSP), an extremely rare soft tissue sarcoma that occurs in the deep layers of skin.
This type of cancer is so rare that only about one case per million is diagnosed each year.
“Although this form cancer isn’t as deadly as other cancer, like breast cancer, it still impacts the patient,” he says. “Some of the people either are left with scaring because large parts need to be removed like for example one woman had it removed from her forehead.”
He used the information obtained from the group to help collect data to get a better understanding of this type of cancer because many times the fewer people are impacted the less information is gathered for these groups.
“Most people haven’t even heard of this disease,” Dr. Gardner says. “I would argue most doctors haven’t heard or seen a case of this disease.”
According to the Department of Health and Human Services, less information on the rare disease is common because of the lack of funding for research. Often times the lack of existing literature and investigators working on the same disease can pose added professional barriers for medical experts wanting to gain more knowledge.
Something that Dr. Gardner says is unfortunate but with this new way of thinking – might just be a game-changer for both doctors and patients.
“We can accomplish so much more than we ever could have and it could help more people. People who are undeserved. People who would never have access otherwise. It can help people regardless of geopolitical boundaries or race or religion or finance. Social media levels the playing field,” he says.
For now, the doctor by day and social media guru by night will continue pushing the envelope, he says.
In fact, his YouTube channel has more 10,000 subscribers from all over the world viewing information and medical advice once only found in textbooks and medical journals but now accessible to anyone with a data connection.
“Putting this information in the palm of their hands,” he says. “That’s important and for me that’s meaningful – it’s changed my life.”
Dr. Gardner is not only passionate about saving lives, but educating the future – doctors he says will soon be taking care of him and his health.
“To be able to partner with these patients and be able to be their storyteller, their mouthpiece basically. Taking their story they have and presenting it from a medical platform. I think it’s a perfect partnership and I think they appreciate it,” says Dr. Gardner.