Transcript
Dr. Mesinkovska:Hi everyone and welcome. My name is Natasha Mesinkovska and I come to you from University of California, Irvine. Today I have the pleasure of having two of my really close friends joining me to talk about the emotional burden of alopecia areata. I have Dr. Kindred, Chesahna, joining me from the East Coast. Hi, Dr. Kindred.
Dr. Kindred:Hey.
Dr. Mesinkovska:And I have Maryanne Senna as well, both of the East Coasters teaming up for me. Why are we getting here today? Because we know that hair is the thing now, and in dermatology we've made huge, huge strides, but hair is never just hair. What I'm going to try to tease out from the two of you today is going to be when a patient with alopecia areata comes to us, when they sit across from us, when we try to talk about everything, we as derms, we talk about SALT scores, we talk about extent of disease, et cetera, but what does it mean to them? Dr. Senna, when a patient comes to you with alopecia areata, what tells you that the disease is affecting them more than their hair?
Dr. Senna:Sometimes you walk into a room and you can see just on the patient's face immediately how it's affecting them, right? You walk in, their eyes are down or they're crying or they just look devastated. Or sometimes in the case of adolescents, they don't even make eye contact with you, they look at the ground. And so then you don't really have to do much of an assessment because all the nonverbal stuff is saying volumes to you.
Then there's the other side where you sometimes have patients who will put on a strong face and say, "I really shouldn't be so upset about this," and blah, blah, blah. "It's not like I have some terrible disease or something." And you really need to, and I think we all do this, you have to slow that patient down and say, "Listen, this is really difficult what you're going through. I appreciate that you're being strong about this, but it's OK to..."
This is really hard, and until people experience alopecia, they often don't recognize it. And so sometimes in those patients, depending on their age, I'll ask follow-up questions like what's going on with work or relationships or if it's a teen, how's school going, friendships? Are people asking you about this? How is it affecting you? Do you have anyone you can talk to about this? Things like that. And you, based on their answers, go in a certain direction.
Dr. Kindred:Dr. Senna, you bring up a good point, that guilt that patients feel for caring about their hair loss. We have to get rid of that. We have to make that taboo, feeling guilty about your hair loss. I agree completely.
Dr. Senna:You're absolutely right. We don't blame patients for feeling bad if they get a cancer diagnosis or a diagnosis of diabetes or they're told they have to have a serious surgery. And it's like you didn't choose to have alopecia areata, you didn't choose to lose your hair and especially have to share it with everybody around you because it's not an easy thing to conceal. So unlike other conditions too, people don't have to know about it unless you tell them. With alopecia areata, you even lose that privacy. So I think it's important that we highlight that for them and try to help take that guilt away because they're dealing with two things, stigma and the loss of their identity and the guilt.
Dr. Mesinkovska:I just wanted to say how something that always kind of takes me back is that whole loss of identity. The thing when the patient says, "I look at myself in the mirror and that's not who I am, that's not the person." Has anyone seen anything that you can relate, Dr. Kindred, anything that it affects people in their daily life? Anything that's just for us to relate to?
Dr. Kindred:Yeah, I was lucky because the three people I saw today, they just had patches. Two had three patches and one had just two patches of alopecia areata. So how important it is to the patient, Dr. Senna, you explained that very well. But on my clinical side, how much does that affect the patient? I was lucky today. They were in areas where the patients can hide, but we know that one out of four of these patients can just have totalis or more than 50% scalp hair loss.
And so the patient with two patches was definitely afraid she was going to lose all her hair. So the reason why I bring her up is she hadn't reached that 30%. In my brain, 30% is severe, she hadn't reached 30%, 50% totalis, et cetera, and she was already concerned about her hair even though she could camouflage. So she was already losing self-esteem. And the reason is she's in sales.
So patients in sales, public facing, or actors and actresses, politicians, et cetera. The occupation plays a huge role, let alone the wives that have never shown their hair to their husbands. So while it's very obvious where severe hair loss can really make a patient completely lose their identity, just because I saw this patient today, it reminded me, sometimes they lose it before they lose a significant amount of hair, which is really…
Dr. Mesinkovska:Yeah, that's very important what you said, because we think of patches, we think of severity, but as you touched upon, it is as severe as it is to the patient.
