>> From coast to coast, Blue Cross and Blue Shield companies stand side by side with our neighbors, investing in local non-profits during the most challenging times, using data to drive solutions and support healthier living and turning ideas into action, remaining true in our commitment to achieve health equity for the health of America.

>> Imagine your hair falling out for no clear reason, and not just the hair on your head but all over your body.

Alopecia areata, it's an autoimmune disease that affects 6.8 million Americans.

Joining us today on "Second Opinion," primary-care physician Dr. Lou Papa, from the University of Rochester Medical Center... >> Hair loss, alopecia -- which is the medical term for hair loss -- can be the sign of other things and not just something on your scalp.

>> Dermatologist Dr. Brett King, from Yale School of Medicine... >> We're able to take people who have no hair at all and give it all back.

>> And founder of Bald Girls Do Lunch, Thea Chassin... >> We do want people to have accurate information and not go to "Dr.

Google."

>> And Sherry Schaefer, who is here to share her personal story... >> Not only was my hairline creeping up in the back, I had some bald spots.

>> I'm Joan Lunden, and it's all coming up on "Second Opinion."

♪ Thank you all for being here today.

I want to start was Sherry.

You've been a hair stylist for years, so you know how hair can kind of, almost kind of define a person.

As I understand it, you were 39, and I think a hair stylist there in the salon said to you that you were starting to lose some hair in the back.

What was happening?

>> Yes.

I was wearing my hair up that day, and she noticed that the nape of my neck had a big bald area and pointed it out.

And that night I went home and really checked it out and realized that not only was my hairline creeping up in the back, I had some bald spots in the back, as well, further up the head.

>> So, did you go right to the doctor?

>> Yes.

I went to my internist, whom I had a regular relationship with.

And I had just colored my hair two or three weeks prior to noticing the hair loss with some new henna that the salon had gotten in.

And he was pretty certain it was the henna.

>> That it somehow, like, burned the scalp or something?

>> Even though I had no signs of burning or inflammation, yes, he thought that's what it was.

But he said, to be sure, I should go to a dermatologist and get an official diagnosis.

I think he knew he was a little bit out of his specialty with this.

>> Okay, but I want to come to you, Lou, because you're a primary-care physician.

>> Right.

>> And, you know, most of us when anything goes wrong, we come to you first.

So, how do you -- when you see something like this, are there tests you can run?

>> Yeah.

It's very interesting, Sherry, how often people are sent to me by their barber or their stylist because they notice hair loss.

And it comes up a lot.

It's a very common thing.

But it's really important that, you know, hair loss, alopecia -- which is the medical term for hair loss -- can be the sign of other things and not just something on your scalp.

So, usually it requires a careful examination of the scalp.

Is there other lesions on the scalp where the hair loss is?

Does the scalp look healthy?

Does it look scarred?

We have to review medications because there's some very common medications that can cause hair loss, other than just chemotherapy.

>> Really?

>> Yeah.

It's rare, but you need to review that, especially if you recently started a medication.

And then, once you do that, there are some conditions that are associated with hair loss.

There's forms of lupus that can cause hair loss.

Thyroid issues and hormonal issues can cause hair loss, and iron deficiency can cause hair loss.

So, very often, that's the beginning of it.

But very often, it's not unusual to refer to a dermatologist, because there are some more serious forms of hair loss that you really want to address quickly.

And you can kind of get the ball rolling before you send them to a dermatologist.

>> So, did you go off to the dermatologist, Sherry?

>> I did, and we talked about doing a biopsy.

But he decided because I was presenting so classically with my alopecia areata, that a biopsy wasn't necessary.

>> So, by the time you went to the dermatologist, had you lost more hair?

>> Unfortunately, it can take a few weeks to get in to see a specialist.

And by the time I got to him, I had lost probably about 30%, 35% or so of my hair.

>> And that's another reason why, for the primary-care doctor, to begin that process, because sometimes access can be an issue.

And that information can be available to the dermatologist so the work-up can go a little bit more.

And especially with that classic pattern of alopecia areata that she's talking about, you can actually examine the scalp, and the hair can look a specific way that an internist or a primary-care doctor can pick up on.

>> So you're saying, Sherry, the dermatologist immediately said, "We've got to treat this."

What did they do?

>> He gave me a prescription designed to reduce the inflammation in the areas of loss and told me to rub it in twice a day.

And the rest of my hair that hadn't come out yet was really, really thick.

So, it was hard to get in there, but I did.

But after about three or four weeks of doing that and not seeing any progress, I became disheartened and decided to just let it do what it was going to do.

>> Did it eventually grow back?

>> It did.

The dermatologist did say it would very likely get worse before it got better.

And it did all fall out, along with my eyebrows, my eyelashes, and most of my body hair.

>> Wow.

>> In about a year and a half, it did fully come back, though.

And then it went again several more times.

This summer, I lost it for the fourth time.

>> Wow.

Alright, a basic question, because I've heard of alopecia.

>> Right.

>> Hair loss.

But this was alopecia areata.

>> Areata.

>> What's the difference?

>> So, alopecia is like saying "fever."

It's really just defining.

Alopecia means hair loss.

>> Okay.

>> And then you have to characterize that further on.

And alopecia areata is a focal.

And I actually had this myself, Joan.

I actually had alopecia areata this past year in the back of my head.

And it's very well-circumscribed.

It almost looks like someone cut out a part of your hair.

Very specifically, there's no hair at all.

The scalp still looks healthy.

>> Like they waxed you?

>> Yeah, liked they waxed you in a very specific -- >> So, no follicles showing?

>> No follicles.

But the scalp looks healthy.

It's not scarred.

>> Interesting.

>> So, it's usually to an area.

And some people lose it over their entire head, and that's alopecia totalis.

Universalis, it's everywhere.

Everywhere on your body you lose hair.

So, it's alopecia areata, a very small patch -- it's very geographic -- totalis or universalis.

>> I want to say something about the patterns and how variable they can be from person to person and even within one's own experience, because I had a classical patch in the back of my head, found by my hair stylist -- very common.

And then it was 10 years -- it was a full decade -- until I had one other patch, and then it was another decade.

And at that time, my hair began to just thin out, looking very diffuse all over, although I did get the baldness up the back of the head, called "ophiasis."

And at that time, you know, in between, it was kind of hard to make a diagnosis, because the thinness looked like it could be some other kind of hair loss.

So, the patterns can be quite different.

And I had my eyebrows for quite a long time.

And, you know, so in my instance, all my body hair went first, then my scalp hair started to get kind of thin and not -- I had hair but no hairdo.

And later on, I lost my eyebrows.

And now I still have some lashes.

>> So, Doctor, I want to come to you.

Let's start with -- can just anybody get this?

Who tends to get alopecia?

>> Yeah.

So, alopecia areata can affect anybody.

We see infants with it, and we see, you know, adults in their 60s or 70s present with it for the first time.

The majority of people present probably by the age of 40, but, again, it can present in any decade of life for the first time.

And it's often a waxing-and-waning disorder, as we've heard.

And it can also be a chronic disorder.

When it is severe and when there's complete loss or severe amounts of scalp-hair loss, it's often chronic, and people don't experience long periods of regrowth, where they enjoy all of their hair for months or years at a time before another episode.

And so, we think of it sort of being in two patterns -- mild, where patches come and go, and then chronic, severe, where there's so much hair loss that it would be obvious to others.

And that pattern tends to be chronic.

>> And is there a genetic component?

>> Yeah.

It's a great question.

The genetics of alopecia areata are very well-described.

There are many genes involved, and each gene is a chance of developing the disorder.

And so, it's kind of like Powerball.

It's unlikely that one gene turns on.

It's highly unlikely that many genes turn on.

And so, that's why it can run in families, but only one person or two people get it and the others don't.

>> And the same way, sometimes it can grow back, but it might not grow back, correct?

>> Correct.

And it's really -- it's one of the parts of this that I think is so menacing and distressing for people who have it is that it's highly unpredictable.

One of my colleagues likes to say, "The only thing predictable about alopecia areata is that it's unpredictable."

And so, people do their best to try to control it, you know -- environmental factors, diet, exercise, you know, these sorts of things.

But it's going to do -- the biology is going to happen in spite of what we do, unless we turn to medicine.

>> Sherry, you lost it, it came back, you lost it, it came back.

And at some point you decided to shave your head, right?

>> Right, each time.

Psychologically, it gives you some sense of control when you're the one that removes the final strands of hair.

And I felt a little more empowered.

And, of course, it made it easier to pop wigs on and off without hair underneath.

>> And I should point out, as you guys probably know, I went through chemotherapy for a year for breast cancer, and I was bald for a year.

And it's a real shocker, you know?

But I was advised by someone, another colleague of mine, Robin Roberts, actually.

She said, "Shave it.

Don't just let it start coming out on the pillow or as you're serving guests food."

Like, just you do it, and then you've taken charge of it.

And I have to say, I felt a little like G.I.

Joan.

You know, when I went in there and got my head shaved in a hair salon, they thought, like, I was like wacko.

But it was -- to me it was psychologically better to do that.

You had teenagers, too, and I also had young kids.

How did they deal with it?

>> Not very well.

They would say things like, "Mom, my friend so-and-so is coming over later.

Can you make sure you've got your wig on?"

And even without the friends, just for them to see me without my hair was hard.

So, I usually made sure that I had a wig on when I was around them, unless it was a really hot day, in which case I would turn to them and say, "Kids, I'm sorry.

Today it's about me and my comfort.

The wig is coming off."

>> And in the salon -- since you brought that up -- what about other people?

Because sometimes there's probably a sense that, is it contagious?

>> Yes.

When I first was diagnosed with alopecia areata, I really was reluctant to even tell my clients, because I knew, of course, it wasn't contagious, but I thought maybe they might be a little concerned that it was.

But I told them, anyway, because I wanted them to know what was going on with their stylist.

>> And, Thea, I want to bring Thea in because I know this is firsthand experience for you.

But you did something.

You started this group called "Bald Girls Do Lunch."

I love that.

So, what are you doing?

You're connecting people who are dealing with the psychological and emotional effects of this.

So, what is your goal with the group?

>> Well, the goal for the group is really all falls under education.

We do want people to have accurate information and not go to "Dr.

Google."

And I would like to just add -- in that conversation earlier about shaving -- is that I have met so many women who have shaved their heads.

I have met nobody who has said they regretted it, but I have talked to so many women who wish they had done it sooner.

So, the collective experiences that our organization brings to people through our articles and writing and in-person and phone calls and all the ways that we connect with the women and also teen girls with alopecia areata helps them, because there is this collectivity of information from the community that I'm leading.

>> There's a tremendous impact with that kind of support from others, that feeling that you're not just alone.

>> That's right.

That's right.

The isolation can be huge.

And what is true is that the moment that a person who has never met another person with alopecia areata does have the opportunity to meet another person, it's like their shoulders were here, and now they're like -- you know, when people come into a lunchroom -- we were meeting in a restaurant -- you know, there's a certain tension.

It's a new situation.

Maybe they have not met anybody else, and they've never talked about their alopecia areata at all.

We go into that, too -- how to talk to people.

And then, you know, after just a short while, you know, between appetizer and dessert, the shoulders are down, the smiles come out.

And, of course, it's gratifying to see this happen and to see the connections that people make with each other.

>> And I should add, we're talking about Bald Girls Do Lunch.

And obviously, as you have said, this can happen to men, too.

>> Yes, yeah.

>> We should just point out.

>> It does.

And probably I don't get through a week without somebody coming in and saying, "You know, I'm worried I'm losing my hair."

>> Really?

>> It's a really common complaint.

>> Really?

It's that common?

>> Absolutely.

And I think the aspect of you saying it defined your personality -- all of us can deal with the slowness of aging, but a sudden change... >> Yes.

>> ...and something that's so defining is as life-altering for a man.

When a young man comes in and says, "I think I'm balding like my father.

What can I do?"

You know, unfortunately, the vast majority of hair loss that I see is usually pattern baldness, either, you know, male or female pattern baldness, which is not a lot that you can do about.

But it is important to make sure.

There are some serious diseases that can be associated with hair loss.

But it is as distressing for men as it is for women.

>> Well, I want to talk to Dr. King about a new therapy that's really exciting for helping the treatment of alopecia areata.

Tell us about this new treatment and how it's helping patients.

>> Yeah.

So, you know, it's really interesting to take a walk, a quick walk, through the history of this disease.

You know, really up until just recently, and still I think all too often, this idea that alopecia areata is caused by stress is perpetuated, and it continues to be perpetuated.

But certainly in the 1900s, you know, medical report after medical report, alopecia areata is caused by stress.

And then, recently, it was really with the genetics in 2010 and then in 2014, a seminal discovery of the underpinnings of the disease, the biological underpinnings of the disease, which elucidated a really important pathway that mediates hair loss in alopecia areata.

And we are able to, with a relatively new class of medicines called Janus kinase inhibitors, or JAK inhibitors, we're able to intervene directly in this pathway and halt and reverse hair loss in patients with alopecia areata.

And so, we're able to -- and this is work that I've been doing for the last seven years, and now it's really -- it's not yet mainstream, but we're in the middle of now phase-three clinical trials of medicines.

And so I'm really hoping that in the next year to two years, we're going to have FDA-approved medicines for severe forms of alopecia areata with this class of medicines called JAK inhibitors that are orally administered medicines.

And we're able to take people who have no hair at all and give it all back.

It's really -- the results are unbelievable.

They're so eye-catching.

It's just -- it's really spectacular.

This class of medicines has completely and forever transformed, will transform, this disorder.

And so, it's a real -- it's an amazing story of science and how science can inform medicine.

And just there's a lot of excitement about it.

>> And I should point out that it's been used in other things.

It's been used in R.A., in psoriatic arthritis, and oncology.

It's a drug that has been used in other things.

But as happens so often, it was discovered that this could also be used in this area.

>> Totally.

You know, it should not surprise us that, right, alopecia areata is an autoimmune condition.

And so necessarily, it shares, right, the pathways, the biological processes that make it happen, are shared with other autoimmune and inflammatory disorders, such as the ones you mentioned -- psoriasis, psoriatic arthritis, rheumatoid arthritis.

And so, this class of medicines is broadly important in dermatology, but also across all fields or all subspecialties of medicine.

>> So, Dr. King, regarding these JAK inhibitors -- the promise sounds great, but is it something that has to be taken for the rest of their lives?

And, most importantly, are there any serious side effects that you're seeing with these?

>> Yeah, it's an important question.

So, bad alopecia areata, severe alopecia areata, tends to be chronic.

And so, we should expect that when a treatment works, one will need to take it chronically in order to maintain hair regrowth.

While I say that, I do have a handful of patients out of 200 or 300 that are undergoing treatment who have taken treatment and are now off of it for a period of two or three years and maintaining all of their hair.

And so I expect that people will need to take them forever, but there will be some who will not.

And the second part of your question, are there side effects or potential side effects of JAK inhibitors?

For sure.

So, the important thing here is to note that there is what is called a black-box warning for cancer and infections and blood clots with this class of medicines.

Now, what I think is most important to know about that, there are a lot of medicines with these kinds of risks.

In fact, probably the most successful in a sense medicine ever, a medicine called adalimubab, has a black-box warning.

And so, we shouldn't think of this as, "Oh, no, everybody's going to get sick taking these medicines."

These are extremely rare events.

But, nevertheless, these are discussions that are really important to be had between the physician and the patient.

>> Thea, you really give women that -- kind of the ammunition to walk through life and be able to really have something ready to say to people who are wondering what's wrong, or is it contagious?

And all of that just makes you feel stronger, right?

>> Yeah, it totally does.

There are four things I think that are the challenges that are so common.

Firstly is being mistaken for a cancer patient.

So, for people with alopecia areata, it's important to know what you're going to say, how you're going to say it, because the person coming up to you is definitely in a different situation or has been through one or they know somebody who's been through one.

I think the second thing that people think about a lot and they feel is a loss of femininity and also the challenge of getting stuck.

I am very much a proponent of choice and options.

Bald is not a goal.

But if you're willing to experiment, I like to say you have unlimited do-overs.

If you try something one day -- maybe you've always gone to work with a head scarf or something and then you decide, "Well, I think I want to get a wig," or "I think I'm going to shave my head and go bald."

If you don't like it, you have unlimited do-overs.

You can try it again another way.

And this is the kind of positive pro-action that Bald Girls Do Lunch is about, and I think empowering.

>> It's kind of a nice way to think of life, too, Thea, is that you got do-overs.

You got do-overs in all kinds of things.

>> Exactly.

>> I see the whole time you've been talking, Sherry's been shaking her head, "Yes, yes, yes."

Final thought, Sherry?

>> Oh, I love what Thea said.

And so much of it is based on your personality.

And it's helpful to remember that with hair loss, it's a process.

You might have been diagnosed with alopecia areata two weeks ago and just cannot imagine wearing a different wig every day if you want to.

But that's one of the gifts of it if you choose to go in that direction.

Alopecia can take your hair -- and I'm going to take my wig off and show you what mine looks like at the moment -- but don't let it take your joy in life.

You have that control.

Just like we were talking about earlier with shaving your head as the hair loss ramps up, you get a sense of control.

Well, you get to decide where to go from that point on.

So, this is mine now.

>> See?

I think you look great that way, too.

Look at that.

And, again, you get to have whatever you want, whatever look you want that day.

>> Yes.

>> You guys, I love, love, love your attitude, and I really appreciate you sharing your stories, especially considering the numbers, the statistics, of how many people deal with this everywhere.

And needless to say, Dr. King, we thank you for the great work that you're doing in this field and the hope that it's going to give so many people.

Thank you all.

And, Lou, thank you, as always.

And I also want to thank all the medical advisors who are with us every step of the way to ensure that we bring you evidence-based, accurate medical information.

And, of course, to all of you at home, thank you for watching.

From all of us here at "Second Opinion," we encourage you to take charge of your healthcare.

I'm Joan Lunden.

Be well.

♪ ♪ ♪ ♪ ♪ >> Find more information about this series at SecondOpinion-TV.org.

You can also follow us on Facebook and YouTube.

>> From coast to coast, Blue Cross and Blue Shield companies stand side by side with our neighbors, investing in local non-profits during the most challenging times, using data to drive solutions and support healthier living and turning ideas into action, remaining true in our commitment to achieve health equity for the health of America.

>> "Second Opinion" with Joan Lunden is produced in conjunction with UR Medicine, part of the University of Rochester Medical Center, Rochester, New York.