Mary Lou Brown has felt so lonely living in Austin. Since her diagnosis with lupus in 2003, she hasn’t found any support groups for people with the disease. She gets a lot of help from her husband and son, but she says no one gets what it’s like to be in pain all day long.
"[The pain] goes from your heel all the way to the scalp, where no one can touch you," Brown says.
Most of us have an immune system that protects us from germs. But if you have lupus, your immune system can’t tell the difference between the bad guys and healthy tissue, so it attacks the healthy tissue, causing inflammation and pain.
"It’s like a bus ran over you," she adds.
But about a year ago, Brown came across a new digital support network called MyLupusTeam, an online community only for people who have the chronic disease, and now she has 600 people to turn to from her phone or iPad.
"This morning I sent everyone a quick message," Brown says. "I said I was having a so-so day today, nine hours ago when I woke up, and then I was just making sure that everyone had a good day and then people respond sending prayers or thinking about you."
Brown says local pharmacies have run out of her medication because of a shortage, so people on that site told her where to buy it online.
"This is the only thing that basically has saved a lot of us, because there’s times some of us are really depressed, and we just need to know that it’s going to be OK and that we’re not going to die," she says.
Earlier this week, people involved in all sorts of health technologies convened in Austin for the first year of South By Southwest’s health and med tech expo.
They were people like Rob Taylor, a manager at Spot On Sciences, a small startup that has developed devices to allow people to collect a blood sample at home by themselves, and Devin Soelberg from Redox Engine, which enables applications to get access to a much larger reach of providers and patients, and Nabyl Bennouri, the CTO of Ultra, which makes a wearable device that warns you before you get sunburned and tells you how many Vitamin D dosages you’re getting everyday.
Sounds great, but it’s not being used in the mainstream, says Mini Kahlon.
"Most of the cooler stuff that you’re seeing, including here at South by Southwest, still happens at the periphery of the health care system," says Kahlon, vice dean for partnerships and strategy at UT’s Dell Medical School. Clay Johnston, the school’s dean, says our current fee-for-service medical system in the U.S. resists innovation.
"The problem is the system isn’t set up to embrace those and bring them in, and in fact it resists them because of the way docs and hospitals and clinics are paid," Jonston says, adding that instead of paying for procedures and surgeries and office visits, patients should be paying for outcomes and for staying healthy, which would promote new technologies.
Mary Lou Brown, however, says if it weren’t for MyLupusTeam, she’d still feel like she’s living on the fringes.
"There’s very few people that would really stop and read a brochure to read what my illness is about, so if I didn’t have them, or I wouldn’t have found them, I’d still be in the same boat. This has helped me better myself 100 percent from where I was," she says.
Lately, Brown’s seeing a growing number of people from Austin using the website. She’s going to suggest something to them she’s never seen here before – an actual group meeting for people with lupus, in person.