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'You are fighting it and you are blossoming': Alopecia advocates share struggles of autoimmune disease and encouragement

"I know it's hard mentally, physically, but just keep going."
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Posted at 6:11 PM, Mar 28, 2022
and last updated 2022-03-28 18:16:26-04

BUFFALO, N.Y. (WKBW) — It is the slap seen around the world.

The shocking moment that stunned the audience during the Academy Awards, Sunday night.

The Academy has released a statement which stated it 'condemns' the actions of Will Smith and will launch a 'formal review'.

The subject behind the incident was due to Will Smith's wife, Jada Pinkett Smith being the brunt of a distasteful joke, by comedian Chris Rock, regarding her hair loss.

Smith has alopecia, which causes her hair to fall out. She was diagnosed in 2018.

As many as 6.8 million people in the United States are affected by alopecia areata, according to Medline Plus. The lifetime risk is 2.1 percent.

Symptoms of alopecia include small round patches of hair loss on the scalp, beard area or other areas of the body that grows hair, "exclamation point" hairs that are narrow at the base and and fingernails that have rows of of tiny dents.

The only way to be sure you have alopecia is to be diagnosed by a doctor.

Local non-profits are also here to help those who suffer from the autoimmune disease.

"Everyone's different. Everyone's needs are different," Children's Alopecia Project founder, Jeff Woytovich told Pheben Kassahun via Zoom, Monday.

One in every 1,000 people in the united states are effected by "alopecia areata", according to the National Alopecia Areata Foundation.

It is also the second most common form of hair loss, after "androgenetic alopecia" which is male and female-pattern baldness.

The Saleh Hair Foundation founder, Bianca Saleh told Kassahun via Zoom, "It's not an illness that is going to hinder you. If anything, it should make you stronger because you are fighting it and you are blossoming. You are being beautiful just how you are."

Buffalo native, Bianca Saleh started her non-profit organization, in 2017.

This after learning a fellow client of hers had alopecia. Having had the disease herself since the age of 17, Saleh realized there were others like her and decided to create a foundation that would help those who are struggling with it.

"They fill out a form. They send it to us. We review it. Make sure they are financial. This is for disadvantaged women and children," Saleh said. "We just go through the process of measuring and seeing what fits for you. If you need like a tight topper, if you have thinning in the top, if you want a full wig."

Since her organization was created, nearly 40 people have been helped, allowing her clients to save thousands of dollars on prosthesis hair.

"I know it's hard mentally, physically, but just keep going. I'm here. The Foundation is here. Everyone else is here to support," Saleh said.

Jeff Woytovich is the founder of "Children's Alopecia Project", which is based in Reading, Pennsylvania.

"It gives them a place to go. Know that they're not alone," Woytovich said.

Created in 2004, the organization helps boost the confidence of children by organizing camps across the nation.

"No medicine has ever been made for alopecia. You're helpless. You really can't get behind it and have a rally and say, 'Let's go, we're going to beat this' because it's just hair. It falls out," Woytovich said. "People don't understand how horrible it is behind a closed door. Sure, it's not painful and you're not going to die from it, but that's how you feel about yourself. It's confidence, it's your self-esteem and that's what we want kids to realize that they are perfect exactly the way they are."

His second oldest daughter was diagnosed at the age of 5 with alopecia. Since then, he has worked to ensure children with the disease are not left feeling helpless.

"There are two camps right now because of what happened[Academy Awards incident]. We have half of people thinking, 'Well, this guy was okay with doing that', and then the other half saying that this guy is okay," Woytovich said. "I hope the narrative changes. I hope everyone apologizes, and move forward from some of this good will and we can find more families to make kids feel like they're not alone."

There is no cure for alopecia. However, when the disease is active in a person, the hair follicles remain alive, meaning the hair can grow back again even after a long period of time.