Woman With Rare Skin Condition Talks About Her Life And Inspires Others To Live To The Fullest
July 12, 2019 01:34 By Mambee
Life is full of challenges, and it’s a matter of choice whether we rise above them or fall under the burden. A woman from Hong Kong, born with a severe skin condition, had to make that choice and, between giving up on life and thriving, she chose to thrive.
Mui Thomas is a 24-year-old woman with a rare skin disorder called harlequin ichthyosis. Her skin does not just look different, it is open for infections and sores and it makes Mui’s life complicated in a medical and psychological sense.
Deserted at birth, this girl was adopted by Tina and Roger, a couple who got so attached to the sick baby that they wanted to give her a chance at a normal life.
They provided their daughter with a loving family and ultimate support through the darkest days of her life.
The adoptive parents were a blessing in Mui’s life, but the rest of the world was cruel and merciless.
"When people see me for the first time, they’re not sure of how to react because I don’t fit into the norm. When people shout, scream or run away, I struggle with it."
The woman suffered bullying everywhere she went, but it eventually made it inside her own home, the only place she felt safe. Mui faced cyberbullying, which almost drove her to end her life.
Choosing life was hard, however, due to the girl’s strong power of will and positive outlook on life, she could scramble out of the horrific experience.
While talking about the case, Tina said:
"Because they can’t see the face to face reaction of the person they’re bullying, they have no idea how much hurt they’re causing."
Mui carried on and learned it was possible to find a calling in her life.
Later on, she discovered rugby. Her father’s passion for the sport inspired her to become a professional referee, and it helped her gain confidence and strength.
"I am just a referee in the middle, nobody actually cares whether I look different or not. They only care if I make a wrong decision. And I love that."
She does not let her diagnosis define her life. Mui keeps being active, passionate and positive. She delivers inspirational speeches, works at schools for people with special needs, and teaches disabled people to sail.
The young woman is the fourth oldest person who lives with the diagnosis, even though doctors didn’t expect the baby to live beyond the age of 3.
Her skin condition makes her scrub off layers of dead skin and apply ointment every single day, which takes hours.
Mui’s skin does not protect itself against germs, so she is always exposed to infections. Another challenge is the risk of dehydration, as she cannot sweat and her body can’t maintain its own temperature.
Despite this all, Mui Thomas is a bunch of joy. She has accepted and embraced her life struggles and challenges in order to carry on with sharing an empowering message: Life is never about giving up!