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Health Highlight: Wed. 16, Aug.
Today’s Highlight(s): How a TikTok creator is using the app to inform and explain what her life is like living with Ehlers-Danlos syndrome.
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I was scrolling through TikTok when the algorithm presented me with a video of a woman in her mid-twenties wearing pajamas and holding up what looked like a giant IV bag. The first words she spoke were, “I can’t eat food, so I have this.” I was immediately invested.
The video titled Part 14 | I eat through my heart and im [sic] absolutely thriving!! is by creator @nauseatedsarah real name, Sarah. Sarah goes on to explain—all while preparing her 2500 ml Total Parental Nutrition (TPN)—that she has a genetic disorder called Ehlers-Danlos syndrome (EDS), which is the cause of her gastroparesis, or “stomach paralysis.”
“In a nutshell, my digestive system is paralyzed, so I can’t eat food. If I eat, I basically throw it back up; I’m in excruciating pain, and sometimes it even causes a seizure.” 1
Sarah’s video stuck with me for a couple of reasons. First, I hadn’t heard of EDS. Second, she presented the information so well that it felt like I took a 101-level introductory course on the topic by watching her 3-minute TikTok. Third, I was impressed by her ownership of the situation and how she used the platform to introduce, explain, and advocate for herself.
I felt at ease learning about her condition, even while watching her perform all of the complicated-looking but necessary daily steps she takes in order to feed and hydrate herself.
“You know how some people live to eat? I was barely eating to live.” 2
Sarah is a creator on a few social media platforms. She has videos on TikTok, YouTube, and a presence on Instagram. On all of her social profiles, she features a link to her GoFundMe, a Union Jack, and a cross emoji. What you won’t see is her shying away from including nasal feeding tubes or medical passports in her posts.
In her TikToks…
Sarah talks about her lifelong struggle to live with her condition, her difficulties finding appropriate care—including getting properly diagnosed—and how getting COVID-19 compounded and complicated her health issues to the point where she thought she would die.
“Everything seemed to be going well until I got Covid; it destroyed me. Covid ravaged my body in ways I didn’t know it could be broken.” 2
In Sarah's other video, Part 5, she talks about how, because of COVID, her health degraded to the point where nasojejunal (NJ) tube feeding wasn’t working, and she was having “full-blown seizures.”
She was transferred from her local hospital to a large teaching hospital in Cambridge called Addenbrooke’s Hospital, where she was placed on Total Parental Nutrition (TPN)—she credits this intervention with saving her life.
Her openness and transparency with her struggles make her videos heartfelt and engaging. Especially when she talks about feeling gaslighted and unheard by the numerous medical professionals she encountered and how using tools like medical journals and trusted health content helped her become a strong advocate for herself, eventually leading her to where she is today, “thriving.”
Fig 1. An example of IV administered Total Parental Nutrition (TPN)—Not the same product featured in Sarah’s TikTok but a similar product.
Ehlers-Danlos syndrome (medlineplus.gov)
Ehlers-Danlos syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues.
Gastroparesis Overview (gi.org)
Gastroparesis is a chronic disorder which means delayed stomach emptying without a blockage.
Parenteral Nutrition (clevelandclinic.org)
Parenteral nutrition is a way for you to receive nutrients by bypassing your digestive system.
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“Part 14 | I eat through my heart and im [sic] absolutely thriving!!”