By Veronica Minard
Meet, Quiel Barrameda, a 35-year-old man from the Philippines who was born with hypohidrotic ectodermal dysplasia (HED). HED is characterized by missing teeth; fine, sparse hair; and the reduced ability to sweat. For Quiel, this means the incurable condition of not having sweat glands.
Imagine living in a climate, where the average temperatures range from 77.9⁰ F (25.5⁰ C) to 83⁰ F (28.3⁰ C), without the ability to sweat. Just going to school or work can be a life-threatening trek. To help cool himself, Quiel relies on a portable electric fan that he carries with him to prevent over-heating.
…during summers here, my body use[d] to reach 40⁰ C (104⁰ F) and believe me the heat is really something. I always use wet face towels to help ease the heat from my body.”– Quiel
Never Leave Home Without It
Just leaving home can be challenging for Quiel, and he prepares well for outings. He never leaves home without an umbrella and hat to provide shade, and he always has money in his pocket for a cold drink to help cool his body. Many of us take small things, like shade and a cold drink, for granted. But, they can be lifesaving for those living with HED.
Working and living indoors can also be a challenge in warm climates.
“Not being able to sweat here in the Philippines is really hard for some people with the same condition like me. We can’t afford an air conditioner,” explains Quiel.
Not only does Quiel have to prevent overheating, he is also more susceptible to respiratory infections. As the world is facing the COVID pandemic, this can be even scarier for those living with HED. Whenever he does get sick, he tries to endure it to save his money for when he is severely ill.
“I got tuberculosis last year, and I had to undergo treatments… I had to spend my last savings for that.”
Quiel also has missing teeth due to HED. Without a health care card, he’s unable to afford the cost to get dentures.
Quiel was diagnosed with HED at the age of five. Unfortunately, he experienced bullying due to differences in his appearance caused by HED. He also had to refrain from playing baseball with the other kids and participating in physical education activities.
With the support of his family, and especially his mom, Quiel graduated high school and completed Associate Degree coursework!
I like to thank my very, very supportive parents and siblings for understanding me, and also my relatives, but most of all my mom, because without her I wouldn’t be able to finish my high school and Associate Degree course.”– Quiel
At the National Foundation for Ectodermal Dysplasias, we support both patients of ectodermal dysplasias, like Quiel, and their families. As a community of individuals with rare, inherited disorders, we recognize the importance of connection and knowing you are not alone. If you are a family looking for resources or someone who would like to support our work, please connect with our community to get involved!