Brynn Is Allergic to the World — Despite Ehlers-Danlos & MCA — She is Making It A Better Place!
Brynn struggles with EDS, MCA and POTs, but she’s passionate about spreading awareness through social media. She believes in “the power of positivity and speaking out about her own experience”.
“At just 20-years-old, Brynn has several serious chronic health conditions, one of which requires her to have a feeding tube and be one of the only people in the world to have a 24/7 Benadryl intravenous drip. She is, essentially, allergic to the world around her. The one that at 20, she should be on the cusp of fully embracing. She is wheelchair-bound a lot of the time, due to a condition called Postural Orthostatic Tachycardia Syndrome (known as POTS) – which makes her faint if she stands for more than a few minutes at a time. Her more complex medical history is strewn with long sought-after diagnoses like Mast Cell Disease and Ehlers-Danlos Syndrome: conditions that you’ve probably never heard of.
Brynn wants to change that – she wants to bring awareness and support to her condition(s) through the power of positivity and speaking out about her own experience.
And that’s exactly what she’s doing.
I first started following Brynn on Instagram because I, too, am a young woman dealing with a chronic, progressive disease. There is a community of us on the Internet, some like to refer to us as Spoonies. Our stories often echo one another’s deeply: years spent learning to advocate for ourselves because doctor’s either weren’t listening or just got it wrong. Horrendous hospital stays, missed days of school, special occasions of youth that should have been exciting that were overshadowed by pain or illness. Many of us do not have romantic partners. Our social lives could be called “limited”. Some of us have supportive families, but even still, we worry always about being a burden. One thing that immediately set Brynn apart was that she was nearly always smiling. Even in a hospital bed, wrapped up in tubes and wires, she looked peaceful, if not always happy. On her blog, Brynn’s Bubble, she mentions how the name for her blog came about, “When I developed the two illnesses, my friends would always joke that I needed to either live in a bubble or cover myself in bubble wrap before ever leaving my house!”
Reading her experience in her own words and seeing her life play out on her Instagram, I found myself thinking often, I wonder how Brynn’s doing? The strange relationships of the Internet often make us privy to people’s lives at the most intimate times — sometimes joyous, others not. The chronic illness folk I follow on social media I often find in my thoughts. I wish they were geographically closer to me – and they may feel the same, though we all know that with our pain, chronic fatigue and other ailments even if we lived next door to each other it would probably be too much for us to get out of bed to let them in! So, I reached out to Brynn via email and asked if she’d be willing to talk with me about what her life is like today –how she’s doing. Not only was she enthusiastic about the questions, but about having another avenue by which to share her story — and hopefully, continue to create awareness about her conditions. First things first, though: let’s take a journey through the medical record of Brynn Duncan and unravel the myths of her conditions.”
Read more, as Brynn describes the ins and outs of EDS, MCA and POTs…
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