Social media has proven to be a powerful tool in spreading awareness about different conditions and diseases that deserve more attention and further research.
Brynn Duncan struggles daily with the affects of mast cell disease. The 21-year-old is doing her part to not only share about her condition, but social media has provided a deep sense of community for a girl who spends countless days in the hospital each year.
She constantly experiences allergic reactions and goes into anaphylactic shock because of her condition. The biggest problem is the fact that these reactions aren’t necessarily predictable, her allergies are constantly changing, and essentially – she’s allergic to almost everything.
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Brynn lives in Easley, South Carolina, and she frequents Greenville Memorial Hospital, or what she refers to now as “Hotel Greenville,” CNN reported. When she asks for her security blanket, those around her know that means her smartphone.
Brynn’s mom Melissa spends a lot of time taking care of her daughter when she’s at home, but providing medication to keep her well isn’t as simple as it might sound. “The meds we have to give her to keep her alive, she reacts to,” Melissa says, shaking her head. “Never in a million years did I think I would be doing this. ” Brynn didn’t start showing symptoms until she was a teenager. After being misdiagnosed multiple times, the family concluded that she had mast cell disease. Specialist Dr. Lawrence Afrin confirmed the diagnosis. But she doesn’t have what would be considered the average case. CNN explained her condition:
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Mast cells are the regulators of your immune system. They’re the ones that release histamine when a bug bites, or when you come into contact with an allergen. They basically sound the alarm that lets the rest of your immune system know something is wrong. Until recently, the only mast cell disease doctors had identified was mastocytosis, which is characterized by “abnormal proliferation and activation” of the body’s mast cells — meaning there are way too many and they act in strange ways. But in the last few years doctors such as Afrin have started to recognize that there are many different layers to mast cell disease. For instance, Brynn has mast cell activation syndrome, meaning her mast cells act strangely, but they’re not growing in number.
Brynn is allergic to most foods, but on good days she can eat certain things. On bad days, she even has an allergic reaction to her feeding tube. “It’s like I’m living in a 24/7 allergic reaction,” Brynn says.
In 2012, Brynn had 30 hospital visits. Her reaction can include seizures and episodes of dystonia. These episodes that cause violent muscle contractions, and doctors have even had to put her legs in casts so they don’t bend in the wrong direction.
She has missed out on what would be considered normal life experiences for a teenager and a girl in her early twenties. But considering such a debilitating condition, blogging (hers is called Brynn’s Bubble) and being active on Instagram give her a unique connection to the outside world.
Having an adorable, loving dog doesn’t hurt either.
Is there anything better than having your dog greet you at the car after you’ve been out of town for a few days? ???? A photo posted by Brynn Duncan (@brynnkaitlin) on Apr 15, 2015 at 6:18pm PDT
“A lot of people with this disease … do, in a sense, have to live in a bubble, because it’s really difficult to get the symptoms under control,” Brynn says. “You spend a lot of time alone. And it can be very isolating. But thanks to social media, I haven’t felt alone.”
Brynn has been making progress over the past couple years, although this will be a life-long challenge unless a cure is discovered.
She was one of the first patients in the nation to be put on a continuous IV of antihistamine. Intravenous immune globulin, or IVIG, therapy, when a healthy donor’s plasma is used to boost a patient’s immune system, cut in half the number of drugs she needs.
Social media has made this journey for Brynn much more manageable. When you’re in a situation that is extremely isolating, the opportunity to not only connect with other people, but to inspire them, is basically priceless.
A photo posted by Brynn Duncan (@brynnkaitlin) on Apr 8, 2015 at 6:02pm PDT
