There are some disabilities that are easily seen and others that aren’t so obvious. Often it’s referred to as an invisible disability. Although, I’ve recently learned non-apparent is the better term since the disability isn’t really invisible. Just not readily noticeable to others.
This month’s conversations will be focused on this topic and shared from the perspective of a person living through it. Harlie is her name and I hope her story broadens our understanding and gives a glimpse of the life of someone who lives with a non-apparent disability.
Bio
Harlie was born and raised in Oklahoma and just got married in April of this year. She is the second oldest of 5. She enjoys video games, crocheting, playing the piano, and ukulele.
Her dream vacation is to visit Japan one day. Currently, she works as a pet groomer and is very active in her local church where she volunteers with the youth.
The first time I met Harlie, she was in her early teens. What stood out to me was her personal style. She radiated creativity and originality…someone who wasn’t afraid to be herself. I didn’t realize at the time there was more going on than what I saw.
Personality-wise, she exuded calm and serenity. There was a sense of deliberateness and intentionality about her. She never rushed but chose to take her time. It was so contrary to how most people her age acted. She seemed like an old soul and I liked her instantly.
What isn’t easily noticeable was the fact Harlie suffers from a rare condition called epidermolysis bullosa (EB for short).
EB
It’s a hereditary skin condition that, according to the National Organization for Rare Diseases (NORD), occurs in 1 of every 50,000 people.
EB impacts one of the following three layers of the skin:
- the epidermis – top layer
- the dermis – bottom layer
- the basement layer – where the epidermis and the dermis meet
The condition occurs because the hooks that hold the skin layers firmly together are badly formed. This prevents the skin from attaching properly and causing it to be very fragile. This means any amount of friction will cause it to blister. The blisters eventually burst, leaving the skin in a delicate state until it heals. Unfortunately, healing takes some time.
According to NORD, there are four main types of EB and it’s determined by where the skin separates. Severity can range in each category from mild to severe.
EBS
Harlie has EBS (epidermolysis bullosa simplex) which is the most common case. Symptoms are:
- it occurs at the epidermis
- brought on by heat and friction
- generally affects the palms and feet
- blisters heal without scarring
Since this is hereditary, Harlie was born with this condition and does not know any other normal. In the next several posts she will be sharing some of the issues she’s dealt with as a result of her non-apparent disability.
The rest of Harlie’s story can be found here: