
Bald and Bold
Clip: Season 4 Episode 27 | 9m 55sVideo has Closed Captions
New medication for those who suffer from Alopecia.
Alopecia areata is not life-threatening but those who have it say it is life-altering. Many people with the condition say losing their hair feels like losing a part of their identity. This episode revisits the story and talks about the newly approved medication to help people with the disease.
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Rhode Island PBS Weekly is a local public television program presented by Ocean State Media

Bald and Bold
Clip: Season 4 Episode 27 | 9m 55sVideo has Closed Captions
Alopecia areata is not life-threatening but those who have it say it is life-altering. Many people with the condition say losing their hair feels like losing a part of their identity. This episode revisits the story and talks about the newly approved medication to help people with the disease.
Problems playing video? | Closed Captioning Feedback
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Learn Moreabout PBS online sponsorship- It's a hard world.
And I didn't want her to have to have any extra battles to fight that she doesn't need to fight, and this is a big one.
- [Pamela] Chelsea Silveira remembers feeling confused as she watched her daughter, Riley, gradually lose all of her hair as a baby.
Soon after Riley turned one, her hair began growing back in patches.
That's when Chelsea took Riley back to the doctor.
- He said, "Well, let's rule out some of the scary stuff."
They did some blood work, all of that was normal.
So that's when we went to see a dermatologist.
And then we went from one dermatologist to the next.
And they all confirmed it's alopecia, which is rare under the age of two.
- Come on.
Wanna come on?
- [Pamela] Alopecia areata is an autoimmune condition that causes hair to fall out from the scalp and other parts of the body.
Scientists aren't sure what causes the immune system to attack the hair follicles.
What was your thought when you hear your daughter is diagnosed with Alopecia areata?
- Gut wrenching.
- Because?
- She's my little girl.
You know, you want your girl to have long beautiful hair and you don't wanna have to accept that there's something different, you know?
- [Pamela] Most of the people who have the condition don't have a family history.
That's the case for this 11-year-old from Bristol.
Riley doesn't remember life with hair, but she's also not one to dwell on what-ifs.
Instead, much of her time is spent doing gymnastics.
She dreams of someday competing in the Olympics.
Do you ever wish you had hair?
Or are you glad that you don't have hair?
- I'm glad that I don't have hair 'cause at gymnastics, if you wear a ponytail and then you have long hair, and if you do a back handspring, you could like get your hand on your hair and then you can mess up and it would hurt.
- So it's an advantage to you not to have hair.
Do people, can I ask, ever say anything hurtful because you don't have hair?
No?
- [Pamela] But over the years it has taken a toll on Riley.
- [Riley's Dad] You're the most special girl in the whole world.
Hair doesn't matter.
Okay?
- [Pamela] When she was just six years old, her mom recorded this video of Riley and her dad talking after Riley said she didn't love herself because she's bald.
- [Riley's Dad] It doesn't matter if you're bald or if you have hair.
(background television) That doesn't make any difference, sweetie.
You want Daddy to shave his head?
I'm gonna shave my head.
Want me to do it right now?
Okay, let's go.
(razor buzzing) We'll get it nice and short just like Riley, nice and bald (indistinct).
- People who have any type of differences get looked at.
You're worried about, are they gonna get made fun of?
Are they gonna find love one day?
What is her life gonna look like?
Is she gonna be okay, emotionally?
- [Pamela] Dr. Lynne Goldberg has seen firsthand the emotional rollercoaster that comes with hair loss.
- Some patients tell you that they wake up every day and just have to put on this armor just to go out and face the world.
- [Pamela] Dr. Goldberg is a Professor of Dermatology at Boston University School of Medicine.
She also directs the hair clinic at Boston Medical Center.
- People think they're sick, people assume they have cancer.
People say terrible things to younger patients.
They compare them to, you know, figures like without hair like it's terrible, it's terrible.
A lot of bullying, things like that.
So it is a terrible, terrible burden for some patients.
And some people deal with it better than others.
- Oh yeah, king me.
- [Pamela] Carissa Casales knows what it's like to be stared at and made fun of.
- Years ago, we went on a family trip and I had a guy who gave me a hard time about not having hair.
He, you know, thought it was funny that I was always wearing hats to protect my head.
- [Pamela] Casales lives in Walpole, Massachusetts with her husband and three kids.
She began losing her hair when she was 23.
For several years she would get corticosteroids injected into the bald patches of her scalp.
- Here, even on your wedding day, you were already experiencing alopecia.
- Yes.
So... - But you had so much hair, you were able to cover the hair loss.
- So much hair that I was really able to cover certain patches of the hair loss.
- [Pamela] After years of injections and seeing her hair regrow only to find more bald patches, Casales asked her husband to shave her head for good.
That was nearly two decades ago.
- Do you remember that moment pretty vividly when your husband shaved her head?
- I do.
I do.
I remember feeling, I wasn't sure if I was going to laugh or cry at the time.
Because it was just such a hard, you know, I was so relieved in a way, but at the same time, wasn't really sure what the future was gonna bring, now being totally bald.
It definitely remains tough because of the fact that people just aren't aware of what alopecia is and automatically assuming other things.
I like to educate people.
When someone asks me, "Are you sick?"
Or they say, "God bless you, your journey's gonna be great."
And I just, I now just take a step back and I say, "Thank you.
It is gonna be great."
- [Pamela] Casales knows everyone's journey with alopecia is different, including that of Massachusetts Congresswoman, Ayanna Pressley.
- For the very first time, Massachusetts Congresswoman, Ayanna Pressley, is publicly revealing a personal battle she is facing.
- This is my official public revealing.
I'm ready now because I wanna be freed from the secret.
- I'm so proud of Ayanna, because her journey was so quick with having alopecia.
It wasn't something I experienced, but something that she experienced.
And many other people in my alopecia support group that I speak to have experienced hair loss almost overnight, within a matter of days, weeks, that they've literally lost all of their hair.
- [Pamela] Casales was excited to share news with her support group over the summer that the FDA approved for the first time, a treatment for alopecia that targets the whole body.
It's an oral tablet called, "Olumiant."
Here you have been waiting decades, - Yes.
for a drug to come on the market that has the FDA's approval.
And yet you're telling me that you can't use this.
- So as I understand, it really works more efficiently for someone who has alopecia for less than 10 years.
And for someone like me who has had alopecia for over 25 years now, or coming on to 25 years now, this is, it's not for me.
- It is true that when you have severe loss, the longer it goes on, the lesser the chances you have of regrowing.
So for patients with recent loss, if they're interested in the drug, the time is now, right?
The sooner that you try the better.
- [Pamela] Casales isn't losing hope that another treatment will work for her, but she says, she doesn't mind being bald.
- It's definitely a different look.
- Yeah.
How do you feel wearing it?
- I feel good.
I feel good.
- [Pamela] Most of the time, Casales doesn't wear a wig.
She says, she prefers to use it when it's cold outside or when she's in an uncomfortable situation, like a job interview.
- I would definitely consider wearing my wig as opposed to not wearing my wig, because I think that people would often judge and look at me as having an illness and being sick because I don't have hair.
- Do you wanna wear a wig?
Or would you rather not wear a wig?
- I don't wanna wear a wig.
- You don't wanna wear a wig?
- Mm (affirmative).
- Why not?
- I don't know.
It itches my head sometimes.
(laughing maniacally) I got your jack, mommy.
- [Pamela] Riley has also tried topical steroids, but it wasn't effective.
- Nooo!
This one's a good one.
- [Pamela] She finds strength in other friends who have alopecia, including model and dancer, Christie Valdiserri.
She's the first bald Sports Illustrated model.
- What does Christie always say?
"Bald is beautiful.
You can do anything.
It doesn't matter if you have hair or not."
- [Pamela] Chelsea says, she works hard to help her daughter feel confident as a bald girl.
- I think the biggest thing is, teach your kids that not everybody is the same.
She's doing so well, but I know we'll have some difficult moments and I hope they're few and far between.
But we've got a good group of friends and family that'll get us through that.
Video has Closed Captions
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