“I think a lot of people judge me for my disability. You get the little kids that stare. You get the evil look when you go into the shops. “
This was told by 18 years old Hannah Harpin with a rare genetic condition known as Hay-Wells syndrome or Ectodermal Dysplasia.
Hay-Wells syndrome is a rare genetic condition having symptoms that can affect the skin, hair, nails, some glands, teeth, hands, and feet. Some of the most common symptoms include abnormal strands of tissue (fibrous) that can fuse the upper and lower eyelids either completely or partially, skin erosions, abnormal hair growth or no hair growth at all, and cleft. Other than this skin color can be different/abnormal, nails can be malformed and there can be dental issues like having baby teeth at a big age. All of these symptoms vary from person to person.
For Hannah, this condition has affected her hair growth, her skin, hearing sense, palate, and teeth development
She had to go through almost ten surgeries as per her, out of which major ones were for her hearing aid, one for her cleft palate, and one for teeth extraction as she had around ten baby teeth in her mouth.
Hannah started facing more bullying upon reaching high school age. Whilst talking during an interview with the team Truly for an episode of Shake My Beauty, she said:
"When you go to high school, people start seeing your flaws. People start to pick out skin color, hair color, and disabilities. That's when they start nitpicking at you. They were just making fun of my lips, the way I look, my eyes."
She also said:
“I think a lot of people judge me because of my disability. I used to take it out on people because I didn’t like the way I looked. But now I’m okay with the way I look because I believe in self-love.”
Hannah has now come open on social media talking about her condition and she now raises awareness on Hay-Wells Syndrome and talks about self-love and acceptance of everyone either with or without any disability.
Hannah Harpin now posts on Tiktok and Instagram as well. She wants to become a model and set an example that everyone should be seen as the beautiful people they are regardless of the body conditions they are dealing with because they come without choice to them.
Hay-Wells Syndrome has affected about 8 people in the UK amongst whom Hannah is one person. Within the world, it has totally affected 30 persons as a whole.
Hannah, who used to take out her angst on other people after facing bullying, has now learned to become accepting of everyone and has changed her approach towards life. Rather than running around societal standards or people's expectations, she has shifted her focus on giving awareness about Hay-Wells Syndrom and is asking people to be accepting of reality and accept everyone for who they are.
We are really proud of Hannah Harpin for coming out loud pouring confidence and her beauty to the world and we are also thankful for her to be amongst the brave ones who teach the world to be a better place.
If you have really found this article and Hannah interesting and life-changing, do follow her and help her raise awareness about Hay-Wells Syndrome and leave your comments about your feelings in the comments section.
“The secret of getting ahead is getting started.”