Navigating the Complexities of Scarring Alopecia: A Deep Dive with Jean Pickford

Narrator: 0:02

Thank you for tuning into this week's episode. We hope you've gained valuable insights into the world of hair care and restoration. If you found this episode enlightening, don't forget to drop us a review over on Apple Podcasts. If you're eager to delve deeper into how HPI Hair Partners can cater to your hair needs, why wait? Connect with us today at HPIhairpartnerscom and make sure you never miss an episode by hitting that subscribe button. Tune in every week for fresh and enlightening updates. Until then, here's to healthier hair and boosted confidence.

Kimberly Vaughn: 0:41

Welcome to Hair Loss. Restore your Roots and Confidence. Today we're so excited we're joined by Jean Pickford, the Executive Director of the Scarring Alopecia Foundation. So you might ask what is the Scarring Alopecia Foundation? Right, it's a nonprofit, charitable organization and the world's only voice for patients with cicatricial alopecia, which is kind of the long version, if you will, for scarring alopecia. The foundation's mission is to provide support to patients through advocacy, patient and physician education and to raise public awareness of all of these permanent and sometimes painful hair loss conditions.

Kimberly Vaughn: 1:23

And so, jean, without further ado, you know you have been with the organization for such a long time and have just built it to. You know grassroots, to really making a difference now. And you know, every time I open up my social media feed, I see something about that you're on the steps of the Capitol or you're presenting at another research event. So I just can't thank you enough for being here and sharing with our listeners and your community more and more about what the organization is doing, where you're going and how you're supporting so many men and women with scarring alopecia. So I'm going to turn it over to you Tell us a little bit more about the vision and the mission of the organization, if you will.

Jean Pickford: 2:11

Thank you so much, Kimberly, for having me on this podcast. This is an amazing opportunity for our organization and for all the patients and caregivers and people who treat scarring alopecia to learn a little bit more about the organization and also learn a little bit more about the disease itself. So, yeah, you're right. I have been with this organization now since 2017. And it is, unfortunately, a growing epidemic of patients that are being diagnosed with scarring alopecia, and so, to give you some background about our foundation, we look at ourselves in three different pillars. The first is research and science. We like to.

Jean Pickford: 2:56

We are taking steps to facilitate more research, encourage research and provide science and medical information to scientists, researchers and our patients. The second pillar that we have is information and education. Unfortunately, when patients are diagnosed with this, previous years there was not a lot of information about it and there was not a lot of resources for these patients to turn to. So with the Scarring Alopecia Foundation, we have changed that and we have a comprehensive website, we have webinars, we have a medical and scientific advisory board, which is made up of world's leading experts in hair loss, and with all of this information, we are able to translate it and provide it back to the patient so they don't feel so alone in this journey and they have information to be more empowered when this diagnosis comes to them.

Kimberly Vaughn: 3:53

So important that your foundation is backed by many of the world's experts that I know and I'm very familiar with and close to and I receive a lot of my training from, and you just couldn't have any more masterminds that are involved in your organization. So I know that gives you great gratitude and an opportunity to just keep diving deeper and growing bigger.

Jean Pickford: 4:20

Yeah, and these individuals are so dedicated to their patients. I sit in meetings with them. I, you know, on webinars, we do, you know, zoom meetings and their dedication to the scarring alopecia patient community is just exceptional. This is a great group of doctors and researchers who care. They really care. I mean, they're doing their work but they really really care about their patients. So the third pillar that I wanted to mention is that we also are a support and a connection organization and, as you mentioned at the top of the show, saf, which stands for Scarring Alopecia Foundation, saf is the only patient advocacy organization in the world for patients with this disease. So you know, when you're diagnosed with this condition, there's a lot of questions, but there's also a lot of emotion that comes with it, because this is a permanent hair loss condition.

Jean Pickford: 5:19

Patients who are newly diagnosed often struggle with coming to terms with it, understanding what's going to happen, and there's an emotional journey and so contacting SAF, being connected with other patients who are walking the same journey as you are, as they are, and also being able to connect with others is really life-changing. So that's one of the strongest and the most empowering things that you can do is to contact SAF when you are diagnosed. So our website is wwwscarringalopeciaorg. It's as simple as that.

Jean Pickford: 5:59

The word scarring is actually cicatricial is the actual medical term for scarring. But a few years ago I did some research and polled our audience and what happens is that the word cicatricial, although that's the medical term, it's difficult to spell, it's difficult to find and it's difficult to pronounce. So we made a conscious decision to change our organization's name from cicatricial alopecia research foundation to scarring alopecia foundation, so that makes it a little bit easier to find and understand and, you know, be able to pronounce and talk about Right, yes, yes, I know it's funny because you know we see so many acronyms right right in the hair loss world and I mean God, love the community.

Kimberly Vaughn: 6:48

They look at us and like what does? Aga, aa, au, you know, ccca, I mean we go on forever and I appreciate you talking about that, because I think that's really the key for today is, let's define for the listener what is the difference between non-scarring and scarring alopecia, and how would so? That's the first part of the question. I guess the second part of the question is how does someone determine what hair loss condition that they're suffering with?

Jean Pickford: 7:21

Okay, so yeah, that's a very common question. So scarring alopecia is a well, alopecia actually is a term that is derived from a Greek root word of alipu, which was a fox, and the fox contracts an infection and then gets mange and then their hair, over time, falls out. So that's kind of the history of the word alopecia. But alopecia just means hair loss and there are many different types. So the term that most people, when I tell people about scarring alopecia, like oh yes, I know, I have a child in you know my neighborhood who has alopecia. But I have to give them the explanation between the two.

Jean Pickford: 8:13

So alopecia areata and other forms of alopecia are non-scarring, which means that the hair follicle stops growing, but it doesn't mean that it can't grow again. With scarring alopecia, the hair follicle falls out and a scar forms over the hair follicle and it is a permanent hair loss condition. So once that hair is gone and you're at an end stage in your follicular unit, the hair will no longer grow again, and so this scarring alopecia is primarily seen by postmenopausal women and adults. You don't see scarring alopecia typically in any pediatrics or younger people. It's typically occurring in the beginning of in adulthood.

Kimberly Vaughn: 8:57

Really great points, jean, and so I think you know, when we talk to our clients that come into the trichology clinic on a daily basis, one of the very first things that we like to do is take a look at their scalp with a dermoscope or a trichoscope right to determine the viability of the follicles. And certainly for a deeper dive, we have to then send them for a biopsy. Then send them for a biopsy, however, being able to see what's going on with the surface of the skin and identifying those viable follicles or those follicular units that are truly growing, versus a very clean, slick view of a scalp that has been, you know, in exposed to scarring alopecia, and so that's one of the reasons that we like to dive into that as quickly as possible, because it does help HPI and my clinical team set standards and set expectations for the individual right, just as you had mentioned earlier.

Jean Pickford: 10:00

I know Well, one of the key things about scarring alopecia is to be diagnosed as early as possible, because it is a progressive condition, skin condition. When patients are diagnosed with it early, you can start effective treatments and ways to stop the progression. Unfortunately, some patients don't know what it is or they go to a doctor who is not familiar with it either and they can be not recognized as early as it could be. Like they'll say oh, you're under stress and your hair's falling out. You know you're going through a stressful situation or it's probably hormonal. You're in, you know menopause or perimenopause and you can see hair loss with that. And so you know, some of these patients leave these physicians going. You know, okay, this is a temporary kind of thing, but really it needs to be looked at immediately and identified quickly.

Kimberly Vaughn: 10:56

Yes, and tell us a little bit. You know, when we think about genetics and you know a lot of people say oh well, you know, is my hair loss due to my genetics? How? How does genetics play into the world of scarring alopecia? Genetics play into the world of scarring alopecia?

Jean Pickford: 11:12

That's a very good question. Unfortunately, right now no one really knows what the cause is of scarring alopecia. There are many different types of scarring alopecia, but the basic problem is inflammation at the bulge bulge of the hair follicle and that is where the stem cells live. And these stem cells are the important ingredient. For when a hair follicle falls out, the stem cells say, oh, okay, time to make a new one. But unfortunately, with scarring alopecia, some type of inflammatory trigger causes these cells to be attacked by your own inflammatory cells or your immune cells. They come and then they attack these stem cells and basically start to, you know, kill them off. And if it can be caught early, there's some work that can be done to help rescue that follicular unit before those stem cells are completely obliterated, before those stem cells are completely obliterated. But if it's caught too late, the whole hair follicle unit is gone and you know destroyed.

Jean Pickford: 12:22

So that is when the scarring occurs and the hair will never grow again. So, yeah, so that's kind of the progression of scarring alopecia. If you want to look at it as a spectrum, some term that has been coined by Dr Jerry Shapiro at NYU is called follicular rescue, and follicular rescue refers to the fact of, you know, catching this early in the mild stage, where the stem cells are still able to, you know, be able to function. Then there's a moderate, where the stem cells are starting that the hair's gone but the stem cells are still alive and they're still functioning below the surface and the hair can be rescued. And then there's the end stage, which is where the actual stem cells are completely gone and then that hair is no longer going to grow or come out Right and you had mentioned that we're seeing the majority of the diagnosis with scarring alopecia taking place at post-menopausal women.

Kimberly Vaughn: 13:21

Does this have any effect with women that have had a hysterectomy or any changes earlier in life that has thrown them into a perimenopausal or premenopausal right, whatever phase they might be in? Does this, is that affected at all?

Jean Pickford: 13:39

There's no, there's no scientific evidence that you know is indicating that there's multi-factors that researchers are looking at into the cause of scarring alopecia, as you, as you mentioned about genetics. About genetics, there may be a genetic component to this. There may be some kind of genetic predisposition that a patient has and then a trigger comes into their life or their body which then causes it to activate. There also can be hormonal, you know, things that can be factored into this, and there also is environmental, which is outside influences that may have triggered something to cause this inflammation. But at this point, which is a very frustrating thing to hear, is that there really is no understanding of what is causing this type of hair loss, and so there's a lot of work that still needs to be done and you know we don't have all the answers just yet, so I can't say for sure if there's anything to do specifically with hormones or specifically with genetics, or specifically with an environmental outside factor.

Kimberly Vaughn: 14:50

And then one other question on that same note outside factor. And then one other question on that same note so with many African-American women that we see in our clinic when they come in and they've had a lot of traction over the course of many, many years and you know, we take the time to go through the trichoscopy and then take a look at the scalp and many times you know, sadly, we don't see viability for growth on the scalp. Is that also a form of scarring alopecia? Jean?

Jean Pickford: 15:23

No, traction alopecia is not scarring alopecia, it's not a form of it at all. Traction alopecia can be a factor into triggering scarring alopecia, but it itself is not a scarring alopecia. A lot of the physicians and doctors that are on our board, you know, encourage patients with African-American hair to not have super, super tight styles, that is, you know, something that can have the trauma to the hair and then could actually activate or stimulate some type of inflammatory process. And then these patients then go into a full-blown case of CCCA, which is central, centrifugal cicatricial alopecia, right right.

Kimberly Vaughn: 16:12

Okay, that's very good, because I know that's a very much, I think, either overstated, you know. Oh, if you have traction alopecia, it is definitely scarring alopecia and we have to set the record straight many times because we do see great results in some of our more aggressive treatment, whether it's microneedling or whatever, that we're able to restore and rescue some of those follicles, just as you had mentioned earlier. So, no, that's really good information. Well, lastly, you started talking about treatment availability, but only and I'm paraphrasing, only when you start early right with this diagnosis. What type of treatment are you and your organization seeing that's improving in starting this rescue process with some of the individuals that are being diagnosed with scarring alopecia?

Jean Pickford: 17:13

So what I have learned over the years is that there's a kind of a ladder of treatments for patients with scarring alopecia there's a first line, second line and then there's a third line right. So the first line is topical anti-inflammatory drugs that can be applied two to three times a week on a patient's hair and that is at the early scalp. I'm sorry that's at the early stages. There can be also intralesional scalp and eyebrow injections as a typical first-line therapy. And you know, the one thing that I've learned from some of our physicians is that this is not something that's going to happen or treat and cure or improve overnight. A lot of these medications you have to use on a consistent basis for a period of time before you will see any type of improvement or reaction, right, and so some patients are frustrated. This is a disease where you want your hair back, you want it to make a change immediately and you need to have patience, unfortunately, with this and you need to have a period of time where you can let these drugs do what they're supposed to do and control the inflammation so that the hair then can calm down, the pain, can mitigate and slow down and the itching and some of the other symptoms that you get with scarring alopecia. It gives it time to settle down.

Jean Pickford: 18:48

If you don't have any progress or any reaction or improvement with the first line of treatment, doctors typically move into the second line and that is using oral hydrochloroquine, which is also known as Plaquenil. They can move into some laser therapy. Eczema laser has been, you know, has been somewhat successful for scarring alopecia patients. Low-dose oral naltrexone is another second-line treatment that doctors can prescribe gabapentin and topical metformin. These are a line of. This is the second line of drugs that are a little bit more stronger. But if you're not responding to the first line of treatments, this would be then a typical course of action for a dermatologist to move into.

Kimberly Vaughn: 19:42

Jean. So I have to ask you know what was it a year and a half ago when the FDA approved the JAK inhibitors for alopecia areata? How is that affecting and bringing light to scarring alopecia, and is that an emerging type of a treatment for scarring alopecia, and is that an emerging type of a treatment for scarring alopecia going forward?

Jean Pickford: 20:04

Yes, it's a really exciting time for scarring alopecia With the approval the FDA approval of some of the JAK inhibitors for alopecia areata. It actually improved and increased the attention on scarring alopecia as well, and these JAK inhibitors are being looked at as treatments for patients with scarring alopecia. There are some investigators who are doing their own investigator-initiated trials that are looking at these JAK inhibitors whether it's topically or orally for patients to improve, and the results have been very, very promising and very, very successful. Having just come back from the American Academy of Dermatology in San Diego in March, the JAK inhibitors are a hot, hot topic for all alopecias and so we're really excited about the potential and the hope for the future for these patients. Oh, fantastic.

Kimberly Vaughn: 21:06

Well, I'm going to share this little secret with our listeners that you know you and I are going to become close friends because there's so much going on with Scoring Alopecia and we want to be able to be on the cutting edge of it with you and be able to share it across our community. So we hope that if Jean is kind enough to us listeners, that she'll come back and join us for other guest appearances and then we'll be able to go ahead and talk a little bit more about different opportunities with treatment for scarring alopecia.

Jean Pickford: 21:42

Oh, I would welcome that. Thank you oh great Well.

Kimberly Vaughn: 21:45

Thanks, jane, again for taking your time today, giving our listeners an introduction to the Scarring Alopecia Foundation, as well as emerging treatments, as well as some signs to kind of keep in mind, right and look for as we're starting to age as women for sure, and so I don't want us to leave the show again without going back to and letting the listener know the best way to find more information about scarring alopecia. So could you go back and share your website with us again, and if there's a phone number or an email address that you would like to share, that would be great. Then we can also add that to the show notes at the end.

Jean Pickford: 22:28

Oh, wonderful, yes, so our website is wwwscarringalopeciaorg and you can also email us at info at scarringalopeciaorg, and also search for us on social media. We have Twitter, we have a LinkedIn, we have Facebook and we have Instagram, so you can find us on there. It's always Scarring Alopecia.

Kimberly Vaughn: 22:53

Great, jean. Thank you again so much, and for our listeners and for you and I. We know that we're working hard and we want to do everything we can to help them have more great hair days every day. Right, absolutely, have a wonderful day, thank you.

Narrator: 23:13

Thank you for tuning into this week's episode. We hope you've gained valuable insights into the world of hair care and restoration. If you find this episode enlightening, don't forget to drop us a review over on Apple Podcasts. If you're eager to delve deeper into how HPI Hair Partners can cater to your hair needs, why wait? Connect with us today at HPIHairPartnerscom and make sure you never miss an episode by hitting that subscribe button. Tune in every week for fresh and enlightening updates. Until then, here's to healthier hair and boosted confidence. You.