October is Dysautonomia Awareness Month and the beginning of the school year, so it’s the perfect kick-off time for a little project that my girl and I have been stewing on for a while.
Though an estimated 1-3 million Americans are living with POTS (postural orthostatic tachycardia syndrome), most people have never heard of it and that includes the medical profession. It’s no wonder then, that most POTS patients are told “it’s all in your head” for years before a diagnosis is found. In fact, most “Potsies” have seen more than 5 doctors over a 5 years before learning about POTS.
Awareness is key, not within the medical community so that people suffering from POTS can find answers and solutions quicker, but in the general community as well so that people begin to understand that not all illnesses are seen. POTS is one of many invisible illnesses. But while these 1-3 million “don’t look sick,” they can have debilitating symptoms as serious as COPD and many children miss years of school.
My girl spent her first two years of high school in a British school in Spain, then moved to Maryland ready to “catch up” on all the extracurriculars and clubs that she missed abroad so that she could earn scholarships for university. Then, as if on cue, POTS reared it’s ugly head and though we tried so very hard, she was soon pushed to home-hospital and spend most of her junior and all of her senior years at home, unable to make friends, dance, or participate in all those things that she’d so wanted to do.
Her grades were good. She worked as hard as she could, but huge sections of her collage apps were sparse in comparison to her “healthy” classmates.
The amazing news is that she’s now in her third year of a microbiology degree on a pre-med track to study pediatrics, and possibly pediatric cardiology, the specialty that found her diagnosis. She still has POTS and bad days, but she can now run 7 miles and goes to the gym regularly. She’s a fighter.
We’ve designed the first of several t-shirts that we have planned. This first one is purposefully basic in order to educate and focus on awareness. It’s a teaching shirt, really and I hope it prompts people to ask questions and learn more.
- To raise awareness about POTS and enter that acronym into people’s vocabulary.
- To raise money for Dysautonomia International, an organization that spearheads research and education for POTS and other dysautonomias.
- To raise money for my daughter’s education. While most of her friends that she was on track with back in the pre-POTS days earned full-scholarships, she couldn’t, so some proceeds will assist her tuition.
The t-shirt is on Booster now. It’s simple, clean, and will educate. One t-shirt can make a big difference.