Thriving Through Transitions: Navigating Young Adulthood with Alopecia

JUDY WILLIAMS:

(00:01)
Okay, we'll get started. welcome to the National Alopecia Areata Foundation's webinar, Thriving Through Transitions, Navigating Young Adulthood with Alopecia. Joining us today are our wonderful panelists, Dr. Amy Polster, Anabel Chang, Ryan Xavier Gallagher, and Vanessa Polster. And I am Judy Williams, Director of Community Support for NAAF. Before we start our webinar, I'd like to cover a few housekeeping details. We have disabled

chat for this webinar session. So please post questions for our panelists in the QA section. Please keep your questions general for the benefit of all audience members. And this webinar is being recorded so all registrants will receive a link to the recording via email. And finally please share your feedback with us. At the conclusion of the webinar a link to a short survey will pop up in your browser window. Please complete the survey

And we will use your input to plan for future webinars.

Note that live captioning is available for this webinar. To turn on the captions, click the CC Show Captions button on the Zoom toolbar and captions will appear automatically at the bottom of your screen.

This webinar is part of NAAF's You Are Not Alone Education and Empowerment webinar series. NAAF gratefully acknowledges the support provided for this webinar series by our partners Lily, Pfizer, and Sun Pharma. And before we get started, I'd like to tell you a little bit about NAAF and our mission. The National Alopecia Areata Foundation is the leading advocacy organization for alopecia areata NAAF's mission is to drive research to find a cure.

And accessible treatments for alopecia areata support those impacted and educate the public about the disease. NAAF's Vision is an empowered community with the choice to embrace or live free of alopecia areata To learn more about NAAF support resources and research and advocacy activities, or to join us as an advocate or supporter, please visit our website at NAAF.org.

We know it can be confusing to hear all the terms used to talk about alopecia areata patchy, diffuse, ophiasis, totalis, universalis, mild, moderate, and severe. The NAAF team wants you to know that even though there are many words used, they all refer to one disease, the autoimmune disease alopecia areata That's what we are here to talk about today.

And now on to today's webinar, Thriving Through Transitions, Navigating Young Adulthood with alopecia. We are so honored to have these amazing panelists joining us today. So without further further ado, I'll stop sharing my screen so that they can introduce themselves and we'll get started with Dr. Amy Polster.

AMY POLSTER, MD:

(03:11)
Hi everyone, I am Dr. Amy Polster. I'm a dermatologist in Cleveland, Ohio, and I've been practicing for over 20 years in Northeast Ohio. And I've not only had the wonderful opportunity to take care of many patients with alopecia areata, but I have a daughter, Vanessa Polster, who you'll hear from, who I've watched grow and deal with alopecia areata.

And she is now in college. So we've gone from high school to college with this condition and very proud of how she's handled that and hoping I could share some of my insight into being a parent of a child slash young adult with this disorder.

JUDY WILLIAMS:

(03:57)
Thank you, Dr. Polster. Anabel?

ANABEL CHANG:

(04:01)
Hi everyone, my name is Anabel I am from Oregon, but I'm currently a second year medical student at University of Florida. And I'm interested, due to my experience growing up with alopecia, in being a dermatologist in the future and hopefully seeing patients myself like Dr. Polster with with alopecia. And I was diagnosed when I was 12 years old in middle school with patchy, and then it developed a totalis and

grew back and then I had totalis again. So I've been through a few cycles of that and I have not undergone any treatments, but currently I'm growing back my hair and I'm excited to be here today.

JUDY WILLIAMS:

(04:43)
Thank you, Anabel. we'll let Ryan introduce himself.

RYAN GALLAGHER:

(04:47)
Hello everyone. Thank you, Judy. It's a pleasure to be here. My name is Ryan Gallagher. I'm twenty-three. I was born in New Jersey. and for a long story short, when I got to college, my freshman year at University, I started losing all the hair on my head pretty pretty quickly. So at first it was like a mildish was diffused and then it switches into totalis and then universalis. This is all in the span of three months. so following that I was totalis for about eight months and then I joined

the JAK Inhibitor trial from New York, where I grew on my hair back pretty fast. and now I am dedicating my life to pursuing the biology behind it, where I'm getting my masters IUP right now and then I'll do my PhD.

JUDY WILLIAMS:

(05:33)
Great. Thank you for sharing Ryan and Vanessa.

VANESSA POLSTER:

(05:37)
Yeah, hi everyone. Nice to meet you all. I'm Vanessa Polster, if you have not met me before, and I'm from Cleveland, Ohio, and Dr. Amy Polster is my mother. So she's gotten to see me sort of throughout this entire journey. But I got diagnosed a little over five years ago now with patchy alopecia areata. And throughout my whole journey I've been mostly focusing on doing the kenelog injections.

straight into the scalp, but I've also paired that with some topical monoxidil and some Allegra as well. I have patchy alopecia areata currently dealing with some regrowth in just one area. And then in terms of where I'm at now, I am currently going into my final semester at Miami University in Ohio before I take a semester off and then hopefully begin medical school. So sounds like we've got a panel full of future amazing providers. So honored to be here.

Thanks for having me.

JUDY WILLIAMS:

(06:33)
Yes, thank you Vanessa and thank you all for joining us today. so we will get started. I know we have a lot of great information to give and share your experiences, so we will get started.

We will get started with growing up with alopecia and you know you becoming independent. So young adulthood is, you know, we know it's a time when we begin making more decisions for ourselves. so I'd like to start by talking about what that transition looked like for each of you. so looking back, how was your experience with how has your experience with alopecia evolved over the years?

Does anybody want to start with that?

VANESSA POLSTER:

(07:22)
I mean, I can tackle my my part of it. But when I first was diagnosed with alopecia, I was at like the most awkward stage in my life. I was, you know, going through puberty. It was so like just really awkward years for me. And that was really tough to all of a sudden have some hair loss on top of that and just be really confused about why this was happening to me, why I can't get it back immediately and sort of where I go from there, who I was.

without that patch of hair. and then as I've gotten older, I think I've become a lot more comfortable in who I am besides my hair. So I think my perspectives have changed a lot. And as you build more friendships, as you go to college and you tackle these new milestones in life, I feel like I've really met people that have shown me that like, you know, they don't care about my hair. So why should I?

JUDY WILLIAMS:

(08:19)
Great. Thank you. And Ryan, I know yours was, you know, it was in a matter of, like you said, a very short span. How what would you say, you know, rather how quickly it was and it developed? What what is your response to this?

RYAN GALLAGHER:

(08:38)
Yeah, so for me specifically, like as soon as I left my home to go to college, like this is the first time I'm leaving my house. The first time I'm like on my own is this is immediately when I started losing my hair. And it was just really drastic at first. Obviously, it's like within three months I had no hair left. and my initial reaction to this was just like hide myself in my dorm room. And I missed out on a lot of experiences looking back now freshman year that were very vital, you know, like

When you're freshman at college, you wanna go out, you wanna meet all your friends. And I really just isolated myself and missed out on a lot of that. But that is obviously not what you should be doing. But yeah, it was it was very it was a really emotional challenge for me.

JUDY WILLIAMS:

(09:20)
Okay, thank you. And with that, we can go to the next question. So when did you start feeling more responsible for managing your alopecia and making your own decisions? So I know we've seen some community members where their parents allow them even before they turn 18 and start, you know, letting them make those decisions. Was it abrupt as soon as you moved out? does anybody care to share their experience?

RYAN GALLAGHER:

(09:53)
I can go again. so for me, when I go to the doctor, I'm I'm always with my mom, but she she lets me take the initiative. But the first time that I felt like I had full experience or full like open situation was when I started getting options of like what medication I could do. so I realized it was actually in my hands and I wasn't just like sitting back and letting the disease take over me.

JUDY WILLIAMS:

(10:18)
Okay. And Doctor Vanessa, did you want to say something?

VANESSA POLSTER:

(10:23)
Yeah, I feel like I'm in a unique situation in that I live in the same home as my provider. And so for me from the get go, it was sort of like this is what we know about the disease, this is gonna be the best plan of attack, these are the resources. So we started right away with the injections. But I do think when I got to college, that was the first time I was able to kind of explore some options for myself, like

I just at C V S one day and I asked, you know, the minoxidil and I was like, I wanna give that a try. So when you're living alone and like you're in this new chapter of life, the stuff just pops up all around you. So it's really cool because, you know, my mom never told me, like, you know, go try monoxidil, but I was like, I want to try that, so why not? Yeah.

JUDY WILLIAMS:

(11:16)
Great. Thank you, Vanessa. And Dr. Polster, so as both a parent and a dermatologist, what have you observed, you know, when these young adults are managing their alopecia, making their own decisions? How how have you seen some parents do this for their for their children?

AMY POLSTER, MD:

(11:41)
Well, I think just like what Ryan was saying, that he he has his mom at the appointments oftentimes as a young adult, but that she lets him take the lead. I think that's a really great approach to be there listening and hearing all the options, but letting your child slash young adult take the lead as to how much they want to be aggressive or not aggressive about the treatment. I think they're

some teens and young adults that want the most aggressive treatments and there are some that are not really as bothered and maybe don't want to go that route. So I think just really letting your your child slash young adult take the lead, especially as they get older, makes a lot of sense.

JUDY WILLIAMS:

(12:31)
Okay, thank you. and on to our next question. So what helped build your confidence during your teenage years and young adulthood? Was there anything that stood out more that really helped boost your confidence?

ANABEL CHANG:

(12:48)
I can share a little bit about my experience, which I think loops kind of back to question number one as well of how my experience with alopecia evolved, which I think is really interesting with this panel as well, with the different range of years that we've had alopecia. So, as I shared before, I was first diagnosed when I was 12. And similar to Vanessa, I think that was a very awkward time in my life, and I think in many people's lives.

in middle school when kind of all you want is to fit in with all your classmates and to be cool or popular and look similar and all those things and go to the bathroom with your classmates and talk about things. And with my hair falling out during that time and pretty quickly, and then starting to wear a wig, but really awkwardly and having it look kind of obvious. But I think that was pretty difficult for me just in

feeling like I belonged and then also finding my sense of self while going through that because I think middle school and high school is a pretty developmental time in most of our lives. so that was pretty tough of just feeling like I first of all looked ugly, like I didn't like the way that I looked and I think that affected my confidence and my activities and and what I did, pretty deeply, but I also felt that I had to kind of compensate for the way that I looked in like school or like I used to do classical piano like competitions and things like that to kind of make it so that my worth was balanced. And obviously that's not the approach that I endorsed, but that's kind of how I dealt with it at first. But then because it's been I'm 25 now so

It's been over 10 years, like over a decade of experiencing it with different ranges of hair growth. I've become so comfortable with it that the way that I look is kind of a big part of my experience now still. And I think that's something that helped build my confidence is exploring with different ways to control the the way that I presented myself, to kind of have something that I could

change based on what I wanted. And so through with me, that was how I dressed in kind of like fashion and style. And that's one of my biggest hobbies now. Even in in med school, like I dress up to go to class for no reason. But I think it helped a lot in giving me confidence to stand in front of people and to go out and to be seen. And now it's kind of more of a hobby now that I'm more used to how I look and just super comfortable with it.

JUDY WILLIAMS:

(15:44)
Great. Thank you.

Did anybody else want to share anything for that before I move on?

VANESSA POLSTER:

(15:54)
mean I think humor was personally really big for me and sort of getting ahead of the questions by taking the initiative when I first met someone. when I was making friends pretty early on in almost all my friendships I was like, hey, just so you know, I have alopecia ariada. You might not be able to tell 'cause I've got these curls, but this is something I've been dealing with over the last five years, just so you know.

And I just felt like that helped me kind of take control of the situation so that like going forward in the relationship, I felt more confident in the fact that they were friends with me, not because of my appearance, but because of, you know, who I was. And then I I crack jokes about it a lot. And sometimes my friends don't know if it's appropriate to laugh and I can tell that they're a little uncomfortable from it. But it makes me feel better knowing that, you know, I can at least have a chuckle about it and I can go about my day and, you know, have a laugh about this thing that

You know, it's really rough a lot of the time.

JUDY WILLIAMS:

(16:56)
Great, thank you. and Dr. Polster, are what are some ways that you think or believe parents can help build confidence and independence during those years?

AMY POLSTER, MD:

(17:08)
So I think that one one of the things that I got as a piece of advice from older and wiser parents was to give your kids roots and wings. And I thought that was really fitting for this topic, especially as your kids are going off to college, is just remembering that all of those things that we've done as our children have grown up to let them know that their family loves them and that they have a home that is always their

safe place. I think letting them explore new opportunities in college, but knowing that they have us sort of like the side of a swimming pool to to grab onto if they need it. And I think that those roots help them have that confidence. Like I have a family that loves me. I have friends from back home that love me. But like just having a chance to meet new people and

Like Vanessa said, tell them this is part of my identity, but not all of it. I think

it's an exciting time for people to go to college or whatever comes after high school. but it's also a little bit scary and overwhelming. And I think that having that roots and the roots and and everything from your childhood helps them with some confidence.

JUDY WILLIAMS:

(18:35)
Great, thank you. so for many young adults, right, college or moving a away from home, as Dr. Polster mentioned, is one of the b biggest transitions, right, that that you face. how did alopecia affect making friends or finding community or just getting involved on campus? And Ryan, I think you touched a little bit on that since your experience of hair loss, you know, when you're you were diagnosed with alopecia was when you started college.

RYAN GALLAGHER:

(19:05)
Yeah, so for me, since since it all happened so drastically, I wasn't really sure how to deal with it. And again, I really just isolated myself from the room in my own dorm room. So again, I did I did miss out on all these opportunities that I freshman wanna have. I didn't go out to any clubs, I didn't go to any social events. I was really just locked myself in my dorm. and looking back on again, I did miss a lot of my freshman year. but you know, over a while after a while I get got tired of sitting inside and

I started taking small steps. even if it was just leaving my dorm room for the day, you know, after class, I'd go up with my friends. I felt like it was all about taking small steps. And then eventually I worked up to going out with them, and so on and so forth.

JUDY WILLIAMS:

(19:52)
Thank you. Anabel anything you'd like to add to that?

ANABEL CHANG:

(19:58)
Yeah, I would say transitioning to college, having to move and stay with roommates was a big motivator for me to stop wearing wigs. which just to me personally, I think because I'm s I was so unfamiliar with how to put a wig on well that I didn't feel like it looked good. And I always felt like I was hiding a part of myself. and that was just

Personally, how I felt. And thinking about going to college and having to have that wig with me, and then like step outside looking different than how I was inside, and then having to explain to my roommates who would be random people that I didn't know and just the mental stress of all of that kind of was a big motivator for me to decide to finally stop wearing a wig, which felt very freeing to me because.

I was always uncertain if I should tell people that I wasn't really friends with, but like kind of knew and again it felt like I was hiding myself, even though everything else, you know, the way I interacted with people and all of that was the same, but it just felt inauthentic to me. So I think having that push was nice for me. and I definitely it was a hard transition. so I had like my

reveal where I just went without the wig for one day. And then after that, I think because I was looking at a picture of myself or something, I I really didn't like the way that the back of my head looked because I thought it was like really knobbly. And so then I started wearing hats almost every day to kind of hide a little bit. And then with that, then I took the next small step as Ryan was saying, to being super comfortable just with with no head covering.

But I think college and living independently for me was a big motivator for that. and for me personally, I I don't bring up the alopecia when I first met new people, especially in college. but there were actually a lot of people that told me later that they thought it was just like a choice to to fit with my my aesthetic, I guess which is fun to hear later on when you're you're closer friends that sometimes people perceive you in a way much better than you expect of yourself.

JUDY WILLIAMS:

(22:32)
Thank you, Anabel And you bring up a another good point. So how, you know, and you kind of mentioned to that, but Ryan or Vanessa, how did you decide whether or not to tell roommates or your new friends in college or classmates about your alopecia if you did?

VANESSA POLSTER:

(22:53)
Like I mentioned, I would I've always been pretty open about it with my closest friends, but I did have some unfortunate conversations with my roommate about it. She was not very supportive about, you know, I organized a walk on my college campus. She said she wouldn't come 'cause she didn't believe I had alopecia. So I mean all of this stuff like just helps you honestly weed out the people in your life and surround yourself with the best possible group of people. So for me

by telling her and getting that negative feedback from her, it was just all the information I needed that, you know, I had these better people I could surround myself with that would support me no matter what. And they believed what I told them. And so for me, I didn't mind being honest about it, even though in that moment it was a little painful. but for me, I didn't mind being transparent.

JUDY WILLIAMS:

(23:49)
Right. Thank you.

RYAN GALLAGHER:

(23:53)
Yeah, I think I think for me I'm like the complete opposite side of the spectrum. like when I first lost my hair, I didn't even know it w like what it was myself. So people would ask me like, yo, what's going with your hair? I'd be like, I don't really even know myself. So I couldn't tell them it alopecia. Like I only knew that much after when I got diagnosed. But as it just started like going away initially, I was just like, yo, guys, I think I'm stressed, I'm losing my hair. And people would ask me questions and I would always answer with that. But I was never like concerned about how anyone felt towards it or anything like that. I I've never experienced any type of negative response to me losing hair.

JUDY WILLIAMS:

(24:32)
Okay, thank you. Thank you for sharing that. And what would you now that you have experience it, what what advice would you give to someone that is preparing to leave home for college or another new chapter for a new job, et cetera? What advice would you give them?

VANESSA POLSTER:

(25:01)
I would just say be really forgetful about the bad things. People in college, a lot of the times you meet them one time and you never see them again. And a lot of the time, you know, you're gonna encounter someone that's maybe had a couple drinks and they might say something that's not fine. Or another thing that's really big right now at college is like wig parties, which I know has made some of my fellow people with alopecia at college a little bit uncomfortable.

So for me, I would say just try to focus on yourself and the group that makes you feel best about yourself and try to forget the bad stuff. You know, I know it lingers with you and it's tough to move on from it sometimes, but when you can maximize your time with the good people, you can kind of forget some of the comments and you can forget some of the parties that make you feel uncomfortable.

JUDY WILLIAMS:

(25:55)
Great, thank you. Great advice. And Dr. Polster, what challenges do you commonly see in young adults that they face when they're suddenly responsible for managing their own health care while away from home? Have you have you seen this in some patients?

AMY POLSTER, MD:

(26:14)
So so depending on that college or university that students are at, they may have a health center that's not that doesn't have a dermatologist that they can refer to if they're in a small rural community for for example. So I think if there's someone who is dealing with alopecia areata for the first time.

One of the things that's helpful is to get them to a dermatologist that's board certified that knows what alopecia areata is. and so sometimes I've heard stories where patients have seen multiple doctors before they get to a dermatologist and they're given strange prescriptions that don't make sense for alopecia areata. And so my advice would be if if you hear of a friend

or someone that is just starting to deal with this to try to find someone in the area that's actually a dermatologist.

JUDY WILLIAMS:

(27:11)
Thank you. And so what are some practical tips that you would give what you would give to them for staying on top of appointments if they are and you know or treatment plants while they're transitioning into adulthood?

AMY POLSTER, MD:

(27:26)
So one thing I think is very helpful is to schedule your next appointment with your doctor or dermatologist right when you're leaving your last appointment, just so that you have it on the book.

And if you are in college, maybe make sure that it's scheduled during your fall break or winter break. and and then there's a lot of apps and things like that where you can follow. so for example, at university hospitals, they have an app. where you can like see when your upcoming appointments are and you know just making sure that you're staying on top of it, putting it into your calendar as you leave the office.

JUDY WILLIAMS:

(28:06)
Okay, thank you. have any of you found like have you what experience have you had about learning about advocating for yourself in like a medical setting for your diagnosis? Have have you had to take more of an ownership for that or have you I know Anabel, you're not on, you know, you haven't had any treatments, but still going to a dermatologist or having explained that, have any of you what has been your experience with that?

RYAN GALLAGHER:

(28:43)
Yeah, I think I have a good answer for this one. so for when I also have Crohn's disease, which is another autoimmunization. And when I needed to get the JAK inhibitor for alopecia, I needed to find a medication that would treat both Crohn's disease and the alopecia ariata. So to get on the JAK inhibitor, I had to convince my gastrologist. What is it? Did I say it? The the the the stomach doctor, you know what I'm saying? To to let the to let me go on the medication because they

They were really against it. They're like, this medication is really risky, you know, look at all these side effects. And they would so show me a medication that's specifically for Crohn's disease, and they'd show me the side effect profile and it was a lot less drastic. But you know, I had to take initiative and be like, No, I really want to go on this JAK inhibitor for my hair and my Crohn's disease. So I think I just think taking initiative is really important when it comes to that. Because I could have I could have taken the other medication and still had no hair now. But it was just my decision that is let me get here today.

JUDY WILLIAMS:

(29:41)
Thank you, Ryan. So what would be your advice for others about advocating for themselves? What how why it's so important?

RYAN GALLAGHER:

(29:53)
like if to just have confidence and it's it's always important that doctors act ask questions if you don't know anything that's going on or what they're saying because they always tell you and they're happy to tell you it's job. You know, I I went to the dermatologist last week and I had literally like a list of questions I asked them. Even though I'm here now I'm like I don't have any issues anymore. I'm still just interested to know. But I think it's always important to ask questions and have confidence and you have to get what you want. So you have to advocate for yourself. You have to be your biggest advocate

JUDY WILLIAMS:

(30:21)
Great, thank you. And Dr. Polster, what do you think is the hardest part about stepping back as a parent? And you in this case, right? You're a dermatologist and a parrot. What would you say is the hardest part when you have to take a step back?

AMY POLSTER, MD:

(30:36)
Think when you're a parent, you're so good at holding on and being there for your children and your teenagers that it's hard to transition to the the most important job you have as a teenager or young adult's parent is to be there for them when they need you rather than smothering them when they don't. So I think the whole letting go is about.

being accessible and being there sort of like the edge of the swimming pool. That's sort of what I keep coming back to and keep trying to remind myself is like when Vanessa needs me, she's gonna call me from school or we're gonna talk late in the evening about what's happening, but not asking too many questions and imposing my worries on her.

JUDY WILLIAMS:

(31:31)
Great, thank you. And how did you balance supporting Vanessa while allowing her to make her own choices?

AMY POLSTER, MD:

(31:43)
I think it was a lot of conversations as far as how aggressive do you want to treat this? Is it bothering you enough to inj do injections? And she would sort of say to me, Okay, I have a patch, it's not growing in all the way, this needs another injection, and kind of letting her take the lead rather than asking her repetitively or too often, how's your scalp doing? how are you doing emotionally about that? And I think

Just one other thing that I think can be helpful is if if your daughter or son is having a lot of emotional stress from the condition to have a professional step in, like a mental health professional such as a therapist, so that you can kind of be the mom or the dad rather than trying to also be a therapist for them.

JUDY WILLIAMS:

(32:39)
Great, thank you. And any other advice you wanna offer other parents going through this transition?

AMY POLSTER, MD:

(32:46)
I think having resources like the National Alopecia Areata Foundation is extremely helpful. So knowing that you are not the only parent that has done this and dealt with this is extremely valuable. And not only is it valuable for the for the kids, teenagers, young adults, but for the parents to know that there are other parents that have been through this and to learn from one another.

JUDY WILLIAMS:

(33:11)
Great, thank you. and another major transition, right, is entering into the workforce and beginning to think about like long-term goals. And I know all of our panelists here are either in medical school, doing their masters, or going to be joining medical school, which obviously you know they're very very long careers or long

College years, right, I should say. So it there's a lot of commitment towards that. but so as as you've been making these decisions and starting to think about your careers, how how has alopecia influenced your experience or your choices that you've made?

Anabel, I think you briefly mentioned on that, you know, early when you introduced yourself.

ANABEL CHANG:

(34:07)
Yeah, I think it's really admirable that all of us have taken something that could be very devastating and allowed it to lead us onto future roles that will hopefully help other people who are going through similar things. And for myself deciding to go into medical school and go on this very long journey of training.

was very much inspired by my experience with alopecia. definitely, especially in like my formative years going through that, like I shared, and struggling so much with my identity and coming through that. I think in the future being able to play a role in the care of people going through similar things and just making them feel that they have someone on their team who who knows about

All the science and medicine behind it, and just someone fighting for them who, in addition with you know family and friends and other social support will be with them is a really comforting idea and something that I really hope that I'll be able to do in the future. so I would say my future career choice is 98% based on my alopecia. And I did also

consider doing a PhD like Ryan when I was in college, but I did like research experience at like some some bench research like in a in a lab there and I enjoyed the personal relationship of volunteering at like clinics and hospitals more than the sitting in the room by myself doing research. And so that's why I chose the role of medicine instead of

researcher, although they're both super valuable. But yeah, it definitely played a big role in choosing my career. And then I also did work in two years for my gap year. So I think for that on the the workforce side of the question, I would say my experience was was pretty good. Again, I didn't really explain my alopecia to anyone going in, but

I I think people think about it way less than than you do. And they just see you as like I think their first impression after that is just like, okay, this is just Anabel or, you know, this is just Vanessa or Ryan. and they don't really think that much about it. Whereas myself, I would think about it all the time in the past. So I think that's something that's comforting looking back, especially for a completely new workforce or a new career.

JUDY WILLIAMS:

(36:56)
Hey, thank you, Anabel And Anabel brings up a good, you know, another good topic about sharing information right about your alopecia, whether at college or a new job. but have any of y'all ever had concerns about interviews or being in a professional setting or first impressions for college in college? I know Ryan, you were obviously in college, but

I know y you ex your what was your experience, you know, going through that? how much did it affect you and how did you get out of that? You know, how how were you able to get through that process?

RYAN GALLAGHER:

(37:39)
Yeah, for me, initially meeting people when I had lost all my hair and was just wearing a hat was very difficult to me. I honestly even found it hard to speak. Like I was just so nervous and anxious person. It was just even hard for me to make words. But obviously as time went on and I talked to more people, you know, I mean like you can't just give up on talking to people. So you're gonna talk to people and eventually you're gonna get better at it and build your confidence. Like one step at a time, like I said before. But yeah, it was just really hard initially. I mean, I would wear a hat.

And when I was Universalis, I would wor I would pull the hat down to cover my eye to cover my eyebrows because I was embarrassed. I didn't even b have eyebrows. Like I would be going up to people like trying to talk and there would be a beanie over my eyes. Like it was an insane experience. But you know, over time obviously we've grown out of that and I've learned how to talk to people.

JUDY WILLIAMS:

(38:30)
Great, thank you. And Dr. Polster, what do you think with this topic, what strengths do you think individuals with alopecia areata develop that can help them professionally?

AMY POLSTER, MD:

(38:52)
Well, I cannot imagine what Ryan went through and the fact that he had the courage to take little steps at a time to get put himself out there is amazing. And I I think the the there's many things that they probably have learned, but courage, resilience, empathy, I think all of those things will make them wonderful physicians, PhDs, human beings,

Unfortunately, when you have something that makes you different, you don't feel like you're fitting in, it makes you kinder, hopefully, to other people that are in a similar situation with alopecia or otherwise. So I would say courage, empathy, and kindness.

JUDY WILLIAMS:

(39:41)
Great, thank you. And what would you like parents of younger children with alopecia to know?

AMY POLSTER, MD:

(39:48)
I would say that if you have a child with alopecia areata, know that they have some unique emotions and feelings about this that are okay. Seek help if you need it. Professional mental health therapists for your your family members, and know that there are some amazing things that will come of this. I I'm looking at these three amazing young adults and very proud of how they've

kind of made lemonade out of their lemons, you know? It's it's really incredible. And I I have no doubt that they are gonna help a lot of human beings in this world. So

JUDY WILLIAMS:

(40:28)
I agree. I agree. And looking back, what are your most what are you most proud of as a parent and an advocate?

AMY POLSTER, MD:

(40:39)
wow. I think Vanessa's a wonderful human being. Just she's a very kind and and special person, but I I think the fact that she is willing to put herself out there and help other people that have this condition. she's she's a mentor and helping a couple young people, as you know. And the fact that she's there for people that are younger when they really need it makes me most.

JUDY WILLIAMS:

(41:09)
Great. Thank you, Dr. Polster. And with that, I'd like to start. I know we have questions coming in. I'd like to spend some time being able to go through these questions. we do have folks asking and I believe Ryan, you did mention briefly what type of treatment I guess somebody's asking what treatment Ryan you use to help grow your hair back what medication since they have a six-year-old as well who has gone who is has universalis in the last six months.

RYAN GALLAGHER:

(41:49)
yeah, so I'm on the JAK Inhibitor trial in New York. So it's a JAK inhibitor, an autoimmune suppression drug. I've been on it. Once you're on it, you have to be on it for life or you'll lose your hair again. So if I stop taking it, I'll lose my hair. I'm also on oral monoxidil. I'm on five milligrams day and night. so 10 milligrams in total. And you know, I see a lot of stuff about supplementation, like tea tree oils and stuff like that, and like oral supplementation. There will always be these things that's like.

this is a new like miracle drug and stuff like this. And I've I can be honest, like I've tried all a lot of this stuff and it's it's not it's not a real thing. Like, you know what I mean? I I would just take the JAK inhibitor and it'll work eventually, I think. And you know, everyone's different in in their time period. Like if someone's responding slowly, I wouldn't just pull a pug. I'd I'll give it a chance to work, you know.

JUDY WILLIAMS:

(42:41)
Great, thank you, Ryan. And I have a question here for Vanessa, but I think it would apply to everyone. this one to Vanessa is you seem to have very beautiful hair. Some people may dismiss the impact of alopecia if it can be hidden. What would you say to them? What's the difference between having an intact

scalp versus even mild alopecia and the reason I ask you know probably all this could apply to everyone you know even the emotional toll even like Ryan mentioned you know if I stop my medication it's that stress like what if I stop or what if it stops working Anabel you know you mentioned also you know you're you're having full hair regrowth you know it's maybe you know

that you can't control maybe what if it falls again, falls out again? So I'll let you all answer that question, but we'll get started with Vanessa.

VANESSA POLSTER:

(43:37)
Sure. First of all, thank you. it's taken me a lot of time to get my hair under control through the years. But usually when I it's not an uncommon occurrence for people to say they don't believe me when I tell them I have alopecia, which is really hard because this is something I've dealt with for five years and it's taken a lot of time and emotion to get through. And for me, usually the first thing that comes to mind when someone says this to me is

Would you ask someone that tells you they have depression to prove it to you? Because a lot of the times when I've had people ask me if I actually have alopecia they say, Well then let me see your patch. And that's that's personal. Like that's not something that I always feel comfortable showing someone when it's something that, you know, is one of the most insecure things I have about myself. so for me the difference between

An intact scalp and having a patch of alopecia may not even be visible on the surface, but me knowing that it's there does take quite the toll on me. So when you have someone that doesn't believe you when you tell them this is something real, I've been going through, I've had, you know, over 20 injections in my scalp in my case to get myself feeling comfortable. It's hard and

Again, you have to take the high road just as much as possible. You have to be the bigger person and take a step back because if they're gonna question you in that regard, I don't feel that they're adding much to your life and your relationship with them.

JUDY WILLIAMS:

(45:16)
Great, thank you, Vanessa. Ryan or Anabel, did you all can you either of you want to add to that?

RYAN GALLAGHER:

(45:24)
Yeah, I could figure it back out that a little bit. Like with what what Vanessa said with people asking like to show show her patch. When I was wearing a hat, people all the time like this was like a daily occurrence. People all the time would be like, can I see what's under your hat? Like it's like some type of a comedic thing. Like and it's just it just it was very hard, but I would I mean I wouldn't show them either. Cause it's just it's a personal thing and people people think it's I mean it's the worst of when people think it's a joke.

'Cause like they're they're asking me to show my hat like like take off my hat like it's an amusing thing. Yeah. That's all I wanna say about that.

JUDY WILLIAMS:

(46:04)
Hey, thank you. Anabel?

ANABEL CHANG:

(46:07)
Yeah, I think my relationship with telling people that I have alopecia has changed a lot as my hair has grown. So when I had totalis and I had a phase where my eyebrows all fell out as well and part of my eyelashes, where I also would wear my hat super low to to cover my eyebrows. And then I'm also short, so I wouldn't be able to see very well. from that to not wearing a hat but still being completely bald.

where it was all more a lot more obvious that I had something that was causing this, that it wasn't by choice. And then to now where most people think it is by choice, which partly it is, but I think something that is changed recently is that I s the way that I feel telling people that I have alopecia, like claiming it, feels a little harder than when I was completely bald. But

know I still have alopecia And I think one thing as well is I sh currently sometimes shave my head because I prefer to wait for certain patches to grow back and so that it grows back uniformly. But when people see me with my hair like shaved really short and longer, sometimes they'll express like something like they'll comment on the growth or

me shaping it and it happens quite often actually. And a lot of times it's good intentions. Like they're excited that my hair has grown longer. But that's kind of a complicated relationship as well because I continuously have to explain why. But for me, I think just because I've had alopecia for so long, I have just like completely own it, which I think plays into why I feel so much comfortable, so much more comfortable not wearing a wig, whereas it's just I I feel like I have completely owned it. And

I think that confidence in it and just being so comfortable with it after all these years definitely adds to people who might make comments or randomly like touch my head without me saying any like allowing them or without them asking, or when I wore a hat, like people trying to pull it off as well. so I think it is an internal thing where people will always try to say something or do something, but if

you just have that confidence in yourself and kind of own it, then makes it a lot easier to just move on and know that it's it's not on.

JUDY WILLIAMS:

(48:39)
Right. Thank you, Anabel. And with all of your responses, this next question actually, I think it's very fitting. what do you wish professors or peers understood about alopecia areata?

I'll give you some time to think about that. So I know, you know, even with you, Vanessa and Ryan, as you explained, and Anabel, you touched a little bit on that as well, asking, you know, I need to see, can I see your patch? You know, can I see underneath your beanie, you know, not understanding? but just in general, you know, and do and have people understood what alopecia areata is, or have you had to explain, etc.

VANESSA POLSTER:

(49:27)
for me personally, I think that they should be aware of the effects of their jokes on at least me. I can understand again, I mentioned like my self using humor has been helpful for me, but when others make a joke about what's going on with your alopecia, it often can come off very negatively, very insensitively. So I would say to others peers

professors, just be careful when you're dealing with someone with alopecia because those jokes like those can linger with a person that you're joking about for a really long time. So when someone cracks a joke to me or one of the other people I know with alopecia, I know that it goes far beyond that one moment where they say something because they think it's funny.

JUDY WILLIAMS:

(50:21)
Thank you. Ryan, were you gonna say something?

RYAN GALLAGHER:

(50:24)
Yeah, agree completely. I think people like have to understand the emotional side of things. And like they don't know what it feels like because they're not going through it. Like they can't see from our perspective of how emotional it is and how those jokes affect us. And I want to also say, like, as a side note, as me, as a man with alopecia, people would just be like I would tell you know I would tell my friends and I'd say like, men lose their hair, you know, just like it's chill, man. Like everyone loses their hair as a man eventually.

a different feeling than having it like all ripped away from you at one time. You know, it's people don't understand that. Especially I was yeah, it's like especially as like men. Like people older men would be like, Yeah, you're just beating me to to losing my hair. And I'll be like, it's just different. It's just different. People have to understand the emotional side, yeah.

JUDY WILLIAMS:

(51:12)
Great, thank you. And now, you know, we've run out of time, but give one more opportunity for another question. as, you know, all of you have explained a little bit about how you've navigated this journey and, you know, your diagnosis, what what is the one thing you would tell your younger self now?

And it can be two things. It doesn't have to be one. I know sometimes it's hard to choose one, but what what would you tell your younger self and you know for others to hear?

RYAN GALLAGHER:

(51:59)
I can go. I wasn't gonna go 'cause I felt like I was talking too much, but I feel like I would say like you gotta take take it one day at a time, you know, as things progress and as the research progresses and it which it is at a insane rate, things will get better and we'll have better treatments with less side effects. So literally every single day that you live, every day that you wake up, go through a day is a win, in my opinion. So just take it day by day.

JUDY WILLIAMS:

(52:24)
Thank you. Great advice.

VANESSA POLSTER:

(52:27)
For me, I would tell myself to be unapologetically myself. I think that when you go to college, it's so tough because you're again trying to blend in with everyone. But literally the best friendships I've made have been people that I've met at random and have just connected with over random things. It has nothing to do with my hair, it has nothing to do with how I look. So I would just tell myself to like just go for it.

NAAF has become such a huge part of my college career and sort of the type of person I hope to be in the future. And I think that by being myself, it's been able to help several people through this organization. So I would say go go for it.

JUDY WILLIAMS:

(53:18)
Thank you. Anabel?

ANABEL CHANG:

(53:21)
think for me because feeling ugly was such a big part of my experience and that hitting every other part of my life I as corny as it sounds would tell myself that I'm beautiful. but similar to what Vanessa was sharing, just being unapologetic and completely owning whatever stage I'm in, however much my hair has grown or fallen out, just being confident in it that

Whatever you present to everyone else around you, and however whatever you tell them and however you present yourself to them is how they will receive you. So It wouldn't.

ANABEL CHANG:

(53:59)
it's only a good thing to be more confident and you know unashamed of who you are and your experiences, to not downplay anything for the sake of other people. and that they're a lot more impressionable than than you would think, and that other people

even if they don't have alopecia or any other medical condition, they worry about similar things as as we do dealing with alopecia that it's not maybe the the condition itself is different from other people, but worrying about how we look and fitting in, like that's that's universal. So I would tell myself that as well.

JUDY WILLIAMS:

(54:43)
Great, thank you. And before we wrap it up, I'd like Dr. Polster, what you as a parent for our parents, what would you say you would do differently through your through this journey? Is there anything you would have done differently?

AMY POLSTER, MD:

(55:01)
I think understanding how much of an emotional toll this takes on your child, young adult, teenager, I I can't emphasize enough, especially like hearing their journeys, that just be aware that there is an emotional toll that we probably are underestimating that

like I'm looking at these three young adults who I think are absolutely beautiful and stunning human beings inside and out. And the thought that any of them think of themselves as less than beautiful is is horrific to me. I mean, they're just beautiful humans inside and out, and just knowing where they've had to go to develop some confidence. I'm very proud of all of them for for realizing that even though they've had this battle and this this challenge that that they are beautiful inside and out. So just having parents know that that you should listen and be there for your child, teenager, young adult, I think is my best advice.

JUDY WILLIAMS:

(56:12)
Thank you, Dr. Polster. And thank you, Ryan, Vanessa, and Anabel. This was great information and advice. And thank you for sharing your stories. I know it can be difficult, right, to share your experiences, but I know this will make a great impact for parents and for those young adults as well who may be navigating through their, you know, are navigating this journey as well. So I'll share my screen again as we conclude our webinar.

Thank you again to our panelists. It's for sharing your stories and your personal experience. And thank you to our audience. Thank you for joining us. Please remember to share your feedback on today's webinar and help us plan future presentations. A link to a short survey will pop up in your browser window at the end of the webinar and your feedback is greatly appreciated.

And I'm excited to share an upcoming event that shines a bright light on alopecia areata. It raises critical funds and helps show the world that it's not just hair. For those who don't know, September is September Awareness Month and the National Alopecia Areata Foundation's fourth annual walk for alopecia is being presented by Pfizer. And as the grand finale of alopecia areata awareness month.

The Walk for Alopecia brings together individuals living with alopecia areata families, caregivers, friends, coworkers, healthcare professionals, and supporters from across the country for one powerful day of awareness, connection, and impact. Together we create hope, build community, drive progress, and help end the stigma surrounding alopecia aerate. The walk is a family-friendly event.

That celebrates and honors everyone affected by alopecia areata while raising funds that enable NAAF to advance research, provide support, education, advocate for the alopecia areata community, and increase public awareness of this autoimmune disease that affects nearly 7 million Americans. The fourth annual walk for alopecia presented by Pfizer takes place on September 26th. Whether you join us from

One of our flagship events in San Francisco, Philadelphia, or Boston. If you participate at one of our 40 plus volunteer-led community walk sites or gather your own team at Walk Where Walk Where You Are, there is a place for everyone to be part of this movement. We invite you to join us to learn more and register. You may visit NAAF.org forward slash walk or scan the QR code on the screen. And we encourage you.

To stay in regular touch with NAAF, use the QR code here to subscribe to our email list for regular updates on alopecia areata News and Research, the monthly NAAF electronic newsletter, and notices about upcoming webinars and other programs. To learn more about NAAF and the resources we offer, please visit NAAF.org or email us at support at NAAF.org. This concludes today's webinar.

Thank you all again to our speakers. Thank you all for your experience, for your words of encouragement, and thank you to all our attendees. We look forward to seeing you on the next webinar.