Alopecia: The Devastating Impact

reached out to me with their stories. I'm using this moment to give our alopecia family an opportunity to talk about what it's like to have this condition and to inform people about what alopecia actually is. Now about Oscar Night, My deepest hope is that these two intelligent, capable men have an opportunity to heal, talk this out, and reconcile the state of the world today. We need them both and we all actually need one another more than ever.

Until then, Well and I are continuing to do what we have done for the last twenty eight years, and let's keep figuring out this thing called lie of together. Thank you for listening. A hundred and forty seven million people are living with alopecia, including me, and it's so much shame around having alopecia, and when you go bald and you don't have a choice, you know what I mean. I think the part that makes it most difficult for

me is that it comes and goes. So when you're going through a spout of something and you've got to shave your head because and it's fallen out spotty, It's like I remember over the Christmas holidays, woke up and you had like this, Yeah that this that was like a scarring alopecia, scarring alopecia. It looked like you had had surgery on your skull. Yeah, it's stressful. Your patch girls, and enough patch comes out, and that gives me a lot of anxiety. Oh well, what's my hair gonna look

like today. One of the reasons why I thought this show is really important because I had so much outreach from people who suffer from alopecia, have children who suffer from alopecia, and they don't talk about it because it's so much shame around it. And so there's so many people walking around who have alopecia that we don't even know. So I felt like it was so important to just allow the alopecia community our brothers and sisters to tell

their story. I think that people don't understand what alopecia is and they don't understand the effects of it. Just three months ago, this story broke our hearts. Growing up in Indiana, twelve year old real alread love to read, sketch and play the French horn in our school band. In December, while attending school at home during the pandemic, Rial's mom noticed a bald spot on our head. Soon, Rio's hair began falling out by the handful. Rio was

diagnosed with alopecia ariata, an autoimmune illness. They tried creams and painful injections to save her hair, but Rio made the decision to shave her head right before she started seventh grade. Her grandma bought her a beautiful brown wig with long layers that she couldn't wait to show off when she went back to school in person. Rio was heartbroken when her new look was mocked by her classmates. Constant bullying and relentless teasing took the ultimate hoal. On March,

Rio took her own life. She was only twelve years old. Rio's mom, Nikki, is here. Thank you for being here with us. Thank you for having me tell us about your precious little girl. She was so smart. She was just brilliant, and she was funny. She was a great big sister. She loved agree and writing and sketching, and she loved being in the band. And with the hair loss, she was so strong. She just rapped it even when it was still falling out, and she just had these

big bald patches. Tried the creams, they made her break out. We tried the injections. She took five of them in one day, but neither of them really did anything. And she was just like, I don't want to do that anymore, Like can we just shave my head? So we did and she just glowed. And then with school coming up, we got her that super cute wig and she loved it. She like glowed then, but at school, within a few weeks she was like, I don't want to wear it anymore.

There's no point. She had a ripped off her head. She'd get smacked upside the head walking down the hallway, and that was within the first two weeks. It got really bad for her. What types of things did the kids to her? She was called a naked mole rat, She was called a bug eyed alien. She was called Mr and Mrs Clean. One of the last things she

had told me she had a really bad day. She had a hat to where during the winter, some of her classrooms were really cold, and she walked into one class and one kid it was just like, real, put your hat back on. I can't stand the glare. Did the teachers know what was Yeah? I just can't imagine seeing a child be treated like that. And I'm the adult. I feel like our teachers nowadays, they're in such a

hard position. Yeah, I feel like their backs are against the wall when it comes to administration and with parents, and Rio had some amazing teachers. Did you ever reach out to the other parents? Oh, I wanted to so bad. I just went through the channels of what I thought I was supposed to do, handling everything and trusting in the school, because really all I wanted to do was go in there and start just kicking things off of counters and screaming at the secretary and absolutely kicking kids.

You can't do that, obviously, I'm fiery, and especially when it comes to my babies. But I knew we would not be taken seriously then, right, So I went through the channels I thought that you're supposed to and still was not taken seriously. Did you notice any changes in her behavior leading up to March four? Rio is always, even as a little one, would just go sit in her play room and play for hours at a time,

and as a preteen, just the same. You know, she's in her room, she's reading a book, she's curled up in her bed on her iPad, and it was maybe a little more, but not I'm reclusive in a bad way, but that's just you know, twelve year old girl exactly. So it was time, exactly. We had a very open relationship with her, like we talked about everything, and she had a really bad day. It was about three weeks before I picked her up from my exes after work and she got in the car and she just lost it,

just stabbing and yelling. She was just cussing up a storm. So I know, like, this is very serious. We gave her a choice. You can either stay where you're at and we will go in there and we will have a sit down, which we did, or we'll pull you, put you somewhere else with a new risk not having your best friend in this bullying. Still following you around,

or you can home school. But we told her, like, don't make any rash decisions, like think on it for the rest of the week, take the weekend, we'll talk about it Monday. And that week I saw an article about a little boy in Utah, twelve year old little boy who was bullied to death and did the same exact thing that she and I showed her that story,

like rio, this is my worst fear. Do not ever think that this is the answer, because I will go to war for you, child, and not just me, but my husband, your dad, your stepmom, your sister's dad, like all, you have an army of people. And she says, I know, Mom, I know. I think we've all agreed. At this point, she knew that she was loved and she murdered herself. Yeah, knowing that we will do something. We have to do something.

We can't sit back and just watch this. Tell us what the morning of the fourteenth was like for you. If that's okay, it's awful. Um, it got up like normal. I have a seven year old avery the girls were at the time sharing a bedroom. I went into Riel's room like I always do. I thought it was weird that the lamp was still on and the way the room was set up, I did not see her. Avery girls, time to get up like I always do, and Avery,

thank god. One I barely open stumble out into the living room and like Rio, because that's normally what I would do. And I'd get like a like a grumble and be like, Okay, she's awake, and didn't hear anything. So yelled again and hear anything, and then it just kind of got this weird, something's wrong. And so then I went all the way into a room and she had hung her is sop with a pair of jeans from her love bed, and I just grabbed her and

started screaming, just Rio. And as soon as I saw her, I knew, And as soon as I grabbed her, I really knew because she was cold, she was stiff. God. I just started screaming and screaming, and I ran out into my kitchen and I fell and I just kept screaming, and then my husband came up and I just said Rio was dead. He was what? Then he goes in there and he starts screaming and and then it's it's just a blur. Yeah. I called nine, and I could hear the sirens right away. We lived very close to

a fire station. But even then I knew, like, there's nothing, there's nothing you can do. And the officer there walked in and he said, where is she and kind of pointed, and because anotherthing like I didn't didn't take her down, did anything to do that. I just knew what we needed help. And he looked at me and at him, and then it just saught. I was one of her dad's old best friends, and so he, I mean, realizes who I am and who who he's about to find.

I mean, I have pictures of this man holding her as an infant. Oh my goodness. And then it was just a flood of uniforms and you could see it in every single one of their faces of just like this beautiful twelve year old girl this is. And then it's just no one prepares you just sign a death certificate for your child. We're watching a Corners fan pull up and then having to sit your seven year old down and tell her that her sister's death. It's horrible.

H m hmm. It's the worst of life I can imagine. Thank you for just sharing this. I just feel like that's really important for children to understand that communication and that amount of pain that's left behind when we do things to ourselves. We're not the only ones who are affected, right, people love us. Just feel like this is going to be so healing in so many ways, gifts such understanding of the devastation around this condition. Yes, it's so important.

Did really leave a note behind? She left too? Okay, the police took the one that they had found. We have not read that one yet. Her dad found a second one in her room. Um, there was no date on it. So she like listed all of us out in the beginning and apologized and said she loved us, and then at the very in the last paragraph, she said, I'm sorry Mom, and I'm sorry Dad. I love you, and there's so much left to say. I just can't. I just can't, and then asked to be cremated and

put with my mom. And oh, that was really rough because that was kind of the plan already. Yeah, but no, I haven't seen the first one, and I'm really torn on that, Yeah, because no answer is going to be good enough. But also that's literally all she wrote. But there's nothing left to say, and once I see that, yeah, I don't know. Really tore it. I don't understand, but I do understand. How are you guys healing as a family.

I worry about all of us a lot. I feel like I have to stay strong, but like I worry a loud about her dad. Cassie and her step mom put it really good. The other day, we're all in this fog. I genuinely don't know what day it is. You can't see that grief monsters there, but you know they're there, and they're just gonna come grab you at any second. Eating has gotten a little easier. Literally have to eat to stay alive. I can't fall asleep for the life of me. Once I'm asleep, I'm all right.

My husband's kind of the opposite. He'll fall asleep, but then he's constantly waking up. Yeah, we did start going to therapy altogether. We just had our first one a couple of weeks ago. I just can't imagine how difficult this is for you. And then you have to put on this mask of break because you're not the child. Yep, you know, so sweetevery she was a wise old soul from the very beginning, and and she's just seven year old. Yes, yeah, she's doing okay, but she's not doing okay, And I mean,

how do you process that seven? How do you sit down and tell your seven year old that her sister is gone? But be that by her own hand. She'll say things like, oh, I wish Sissy, what does decided to stay alive? Or I wish Rio was still here. I'll say me to Avery and she's like, yeah, but you think she knows how clouds feel. Now. She's just the sweetest and she just got Student of the Month for April and Avery was like, do you think Real would be proud of me? She's proud of you. They

were the best of friends. And then like she was in there with her, and that scares me to my court. I don't think she saw anything, but I literally like she was right there and some weird, kind of magical something happened in that room where she's just absorbed some of Rio now or I don't know if that sounds crazy, but just that's not crazy at all. It's hard. The

hardest thing. We knew Rial was in pain, and we knew that she was struggling, but she was such a fighter, and you know then not even two weeks later, Oskers was on. It's just like what is the universe doing right now? This is crazy. People are going to be googling what is alopecia? What is this that we've never heard of? It's not a joke. I mean the allopation community was already in an uproar. We had heard from so many people. I didn't realize how huge and amazing

that community is. It's one of those could have shut it what ups Yeah, if I really wish it would have found them for her sooner instead of them coming and speaking at her funeral. Well. Real's death was heart crushing for so many of us in the alopecia community, and there were so many that didn't know her, but they definitely wanted to send a message. My heart just breaks for Rio's family. In middle school, I was bullied relentlessly for losing my hair, and it was one of

the hardest times in my life. But I hope that you guys know that we will all honor Rio's memory and uplift her spirit. No child should ever feel less than because with their hair, and no family should have to go through what you are enduring right now. Rio has touched so many people's hearts throughout the whole world. I feel like Rio is a part of my life and a part of my heart. It is so tragic and made me want to scream and cry. My name is Grace and I live in Gresham, Oregon, and I'm

very sorry for your love. And the Alopecia community in d is here, and we're gonna put an end to bullying. I would like to say I'm so so sorry to Rio's family for the loss of their sweet, innocent, beautiful little Rio. Everyone in the Alopecia community promises to carry on her name and make sure that no little girl or boy ever feels alone or ashamed of alopecia. We

are with you and we're here for you. I can't imagine what you're going through, but just know that real story is going to inspire and impact so many and I know that she will be the reason that change happens. Well, I have to agree, Yeah, it's like real story through that's really difficult. Time has been really inspirational for me. I always knew that baby would changed. I hate it's this way. When I heard her story, it affected me so profoundly. I feel like I'm a part of such

a beautiful tribe. Alopecia communities such a beautiful, amazing trap and um, I feel like I have this family that beautiful Rio is a part of. And so just thank you once again for your courage or your strength and willingness to share her light, to share her story, to share the story of your family, because it just helps to educate us. All I have to thank you deeply. Dr Mina Singh is a board certified dermatologist and a hair transplant surgeon. Can you tell us exactly what alopecia is.

There's a lot of confusion around it. Alopecia is just an umbrella term for hair loss, but there are many different forms of alopecia. The kind that we were all discussing just now is the autoimmune kind. So that is alopecia ariata. It's affecting about seven million individuals in the United States. That causes rapid hair loss where you can get so pullar smooth bald patches, and it can affect the eyebrows and eyelashes. If it affects the rest of the body where you have no hair, we call that

alopecia universalice. Typically that occurs in individuals under thirty. Both of these types of alopecia are autoimmune, which means that your body is mistakenly attacking the hair follicle. We don't know entirely what causes it, but we do know that there may be a genetic predisposition. So I think you have alopecia ariana and you were getting the injections. Was it painful? Yeah? I was shocked. I was like, I

couldn't do that. Oh. The steroid injections with that involves are several pokes on the scalp in the affected areas. I have ways to make it less painful. Sometimes we use vibration or pressure, and generally they go by really quick, so if you can just bear with us and get through it, it happens really quickly. Yeah it didn't work for you. Yeah, it just had to go so often, you know, and if you miss it, I just I'm done. Yeah, And unfortunately, with autoimmune alopecia there is no cure, so

the first line treatment are steroid injections. They directly target the inflammation around the hair bulb, so they're suppressing the immune system and often we do around eighty pokes or eighty injections just into the scalp. We try to do them once a month. Because when they start to wear off after several weeks. So with Black women, we manifest

other forms of hair loss more frequently. Traction alopecia is the most common form, and that's where we tend to lose the frontal hairline or we say lose our edges from tight hairstyles, and that can occur in about one out of three adult Black women. And then there's another form of hair loss more common in Black women, and that is a scarring, permanent, destructive form called c c c A or central centrifugal sickatricial alopecia that can destroy the hair follicles. There is now known to be a

genetic predisposition to this. Tight hairstyles can make it worse. Possibly relaxers things like dan druff may exacerbate it. The treatment for c c c A is very similar to how we treat autoimmune alopecia, so we will often start with steroid injections. Early recognition, diagnosis, and management is the best way to prevent c c C A from becoming

more severe and more scarring. I always advise that if you have hair loss, please do see a dermatologist that specializes in hair loss because we don't want to miss the diagnoses. So Gina Knight worked in the hair industry for over a decade before losing her hair from c C c A. She wrote a recent article about living with alopecia. Gina joins us from home in England. First of all, just watching what's been going on abouts fall, I'm emotional. It's just such an important issue. So thank you,

thank you so much, thank you, Gina. Well, tell us what your journey is like. Gina, I've had this for over a decade now. I was pregnant with my first child. I had a very small circular spot of hair loss and I thought, I absolutely don't know what this is. So I went to the doctors and unfortunately my diagnosis was all over the place. He said it was probably part of my postpartum shedding, and as someone who listens

to her doctor, I ignored it. And especially with c C c A, that's the worst thing you can do is ignore the hair loss, because that spot grew and grew and grew, and eventually I couldn't hide it or shield it. Gina, what did your hair mean to you? It has been said that I am hair obsessed and there's a reason behind that. So I was raised in private foster care with a white family at eleven months old, and God rest my mother's soul, she could not do

my hair. I always felt that my hair was problematic, and up until the age of eight, she used to shave off my hair, cut it really short. And that's where I figure I get the kind of anxiety from having a bald head. I just feels like, oh, you're

you're problematic. So at the age of eight, I said, please, don't cut my hair again, please, And I started to learn how to do my own hair, and it just became such an important part of how I would connect with my Nigerian heritage because when I went home, there was no one for me to relate to. So hair

was my way of relating to other Black women. And it's something I've taken from starting my blog and then going on to work in their hair industry and becoming a wig designer who specializes in Afro textures because I am obsessed um, and then to sort of then lose that, it definitely felt like I'd lost a huge part of myself. My hair was just such an important part of everything

about me. I could always connect with other women because we had the same hair, We felt the same about our hair, we had the same woes, and we had the same joys. Right, I completely understand that. Yeah, I get that completely, and that being your only way of feeling connected. That goes deeper than just that's like I lost my corn of where I felt I was connected, you know what I mean? It makes a lot of sense. So, yeah,

it's been a journey. I'm finally a good place with my hair loss, but it's definitely been something that has taken an emotional toll on me. Yea, Dr Mina, what kind of mental health impact do you see in your alopecia patients. I think it's difficult for people to empathize with our patients that have hair loss because it's not life threatening, but it takes a significant psychological toll on

their mental health. I have patients whose significant others and their family members haven't seen their scalps and years because they have to hide it even at home. Yeah. I feel like hair is how you show who you are, your identity. Really, that's sometimes why it's so hurtful. Yeah, I know what it meant for my hair to start falling out six years, right, Yes, I do want to talk about men that suffer from alopecia. We don't want

to underestimate the mental toll that it takes on them. Yeah, I really wanted an opportunity for our brothers to speak about this. I was diagnosed at the age of ten. They took me about six years to finally accept it. It was a constant battle not being comfortable in my own skin. I did a good job of putting a mask on and acting like everything was okay, but in the inside, it wasn't. Alopecia drove me to become a bad basketball player, and he also helped me become a

better person and be firm. Believe everything happens for a reason. The reason why it happened to me is because now I have the opportunity and I had the platform to help others with this condition. I was diagnosed with alopecia and two thousand and twelve, and just like Jada, I lost all my hair in the shower, it felt like hair was in my hands and I looked into the

mirror and I'm gonna be honest with you. Tears started to roll down my cheeks and I started to question my worth, my value, my identity, Throughout my journey, I've wished people understood how draining it can be to deal with ignorance, and that often people respond to something that they don't understand with either anger or amusement. I think as a man with alopecia, it's been a journey to understand who I am in my appearance and my values. It can be a vicious visual disease, and it can

be difficult to be perceived as different. I wore a wig for many, many years because I felt like I had to hide. We have this really weird misconception that it's easy for guys because being bald is a style. I was seven when I first law my hair, and I was kid literally try to break my hand one time just because I was bald. Now it really has become one of my favorite things about myself because it's made me you realize that your worth doesn't come from

your aesthetics, period comes from who you are. That's right. Well. I wanted our brothers to speak about this because I didn't want that stereotype and that perception that because you're a man and you're losing your hair, it doesn't matter, because I know that's not true. That was really important to me. Nikki. Once again, I really feel like your testimony is so powerful. He did a great job. I can't thank you guys enough. To join the Red Table

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