People with alopecia share their stories: ‘Hair does not define any of us’

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• Judy Woodruff:

  Alopecia areata, an autoimmune disease that leads to hair loss, was brought to the center stage at the Oscars when actor Will Smith slapped comedian Chris Rock after he made a joke about Smith's wife, Jada Pinkett Smith, who suffers from the condition.

  We wanted to dig deeper into alopecia and what life is like for those who deal with it every day.

  The "NewsHour"'s Nicole Ellis recently spoke to a leading expert to learn more about what we know and don't know about the autoimmune disorder.

  But, first, we hear from people across the U.S. who live with the disease.

• Ebony Jean, Michigan:

  My name is Ebony Jean. To date, I have lived with alopecia for 27 years now.

• Simon Rubenstein, New York:

  My name is Simon Rubenstein. I have had alopecia now for nearly two decades. I was first diagnosed when I was 8 years old. I found hair clumps in my bed. I found bald spots. I wasn't really sure what to do.

• Deidre Nero, Florida:

  My name is Deirdre Nero. I turned 45 this year.

  And I started to have patchy alopecia when I was 21 years old. So it's been over half of my life now. So, this is a wig that I wear. So I'm going to take it off, so you can see what my alopecia looks like.

• Bob Flint, Texas:

  My name is Bob Flint. I was 3-and-a-half when I was diagnosed with the disease. And, frankly, I don't remember. My folks, I'm sure, told me. But that is how I found out.

• Jonelle Massey, Ohio:

  My name is Jonelle Massey. And my daughter's name is Kayla (ph) Massey.

  Kayla has been living with alopecia since she was around 4 years old. She is now 10, so six years.

• Ebony Jean:

  Growing up, dealing with hair loss, a lot of people mistreated me for my appearance because they asked so many questions regarding my condition, and they made me feel less than, because I know dealing with hair, being a woman, a lot of people use that as a way of defining our beauty.

• Simon Rubenstein:

  It is very difficult. Children can be very mean, very hard on the playground or in the cafeteria. I experienced people ripping my hats off or just staring at me.

• Deidre Nero:

  Didn't know a single other person in the world that had alopecia. I thought I was the only one on earth that was dealing with this, or at least it felt like that, even though I knew — intellectually, I knew that that was not true.

  I felt very alone and had a hard time dealing with it. So, I hid it a lot for many years.

• Jonelle Massey:

  I was caught off-guard. And I was very emotional.

  So, we were constantly trying to make sure that we were not projecting feelings onto our children, who were really young, and not experiencing some of those emotions that older teenagers and young — adults go through with the grief and the loss and the emotional toll that grief takes.

• Bob Flint:

  The biggest issue is, we are regular people. We don't have hair, but that doesn't change us. That doesn't make us slower or faster. It is just hair until you start picking on me as a kid or laughing at me or pointing me out in the crowd.

  And that is where it hurts. It is in the head. It is clearly in the head. It is the psychological impact of the disease more than anything else.

• Ebony Jean:

  I would like people to take away the fact that hair does not define any of us. And alopecia may not be life-threatening, but it is life-altering.

  It affects a person's livelihood, as well as their mental health. So, it is just time for everyone to show a little more respect for the alopecia community, and to educate themselves more on the condition and how they can support us.

• Deidre Nero:

  I'm an attorney. I'm an immigration attorney in Miami, and I have my own law firm. And I have had colleagues ask me after they saw a picture of me without hair if I would be able to handle the case or not because I was sick.

  It is draining and exhausting to have to constantly be dealing with it all the time. And so just to be kind to people and maybe a little more understanding.

• Jonelle Massey:

  Empathy is different than sympathy and the power of pity, but your encouragement and your validation that we do have sad days and we do have happy days, but we are going to be there nevertheless, that we are still blessed.

• Nicole Ellis:

  For a closer look at alopecia and the different ways the disease can affect people, I am joined by Dr. Brett King. He's an associate professor of dermatology at Yale University's School of Medicine.

  Dr. King, for those who have never heard of alopecia, what exactly is it and what do we know about who it impacts?

• Dr. Brett King, Yale University:

  Yes. So, it is an important question.

  Alopecia just refers to hair loss. And that means hair loss broadly. So, that includes male pattern hair loss, female pattern hair loss, alopecia areata, and then other forms of hair loss.

  What we have had a lot of attention to in the media recently is the form of hair loss called alopecia areata, which is an autoimmune form of hair loss that affects people of all ages, all races, though it typically occurs for the first time in the first, say, 40 or 50 years of life.

  But, again, it is an autoimmune form of hair loss, so distinctly different than, say, male pattern hair loss.

• Nicole Ellis:

  So, you mentioned alopecia areata, but are there different types, or what are the different types of alopecia?

• Dr. Brett King:

  Yes, so alopecia areata most commonly is characterized by a spot or a few spots of hair loss.

  And these can be the size of a nickel. These could be the size of a half-dollar. They are often round or oval-shaped patches of hair loss, typically involving the scalp. But they can involve an eyebrow, the eyelashes, the beard area in men.

  And, again, this is the most common presentation of alopecia areata. Of course, there can be more severe presentations as well, where people lose 50 percent or 80 percent or 100 percent of their scalp hair. The folks with the most severe presentations are often said to have alopecia totalis or alopecia universalis.

  But, again, it is all alopecia areata.

• Nicole Ellis:

  How does this disease progress? What does it do to your body? And is there treatment for it?

• Dr. Brett King:

  Again, going back to the most typical presentation, that is, somebody who develops a spot or a few spots of hair loss, this will be what majority of people ever have with alopecia areata.

  One of the menacing things about this disease, though, is that it is very unpredictable. And so we don't know who is going to be the person that, in three weeks, three months, or three years, those two spots are going to turn into complete scalp hair loss or complete scalp hair loss, in addition to loss of eyebrows and eyelashes.

  And it is that unpredictability which makes — or is part of what makes the disease so difficult to deal with.

  What is really exciting, getting to your question of, are there treatments, what is really exciting is that, up until recently, there was not thought to be a very good treatment for people who have severe alopecia areata, people who have lost 50 percent or 80 percent or 100 percent of their scalp hair.

  One of the really exciting developments is, just two weeks ago, a paper was published in "The New England Journal of Medicine" showing a new medicine called baricitinib that grows hair in up to 40 percent of people with the most severe form of alopecia areata.

  And so, indeed, what was once something that was thought to be untreatable, we're completely changing that paradigm, and, indeed, there is hope for the future for people with this disease.

• Nicole Ellis:

  While there is some progress, there are still many people who experience alopecia or hair loss in severe forms.

  What do we know about the impact this disease can have on the mental health of people who are diagnosed with it?

• Dr. Brett King:

  It is such an important issue to address.

  Alopecia areata is very often a devastating disease to suffer from. I think all you have to do is understand what it would — or try to imagine, rather, what it would be like to wake up to all of your hair on your pillowcase. It's confusing, at the very least, and, again, wildly devastating to just imagine what that feels like.

  Your identity can be erased in a moment. People with alopecia areata or severe alopecia areata are often thought to be sick, right? This is an appearance that is easily mistaken for somebody with cancer undergoing chemotherapy.

  And so the impact of this disease on quality of life, on personal identity, on cultural identity is tremendous. And so it really highlights why we need to keep pushing to make this disease better and to find effective treatments.

• Nicole Ellis:

  Dr. Brett King, associate professor of dermatology at Yale University's School of Medicine, thank you for joining us.

• Dr. Brett King:

  Well, thank you so much for the opportunity.