I first noticed it shortly after Joanie was born. As is typical of the postpartum period, my hair started falling out right when my baby turned four months old. I remembered it when Jackson was a baby, too, and the women in my new moms group all talked about this unpleasant side effect of new motherhood over our weekly lunch dates, bouncing our babies on our hips while juggling plates of salads and fruit. The irony was lost on no one that as soon as we started looking and feeling a little like ourselves again, our hair started falling out. “There’s so much hair in the drain of the shower every morning,” they’d say. “I brush my hair and it all comes out!” “I’m shedding like crazy.”
So, when I found myself making those very same comments a few months after Joanie was born, I shrugged it off. This is normal, I thought. It happened after Jackson was born, too, and eventually my hair stopped falling out and it all grew back. But this time, months went by and the shedding didn’t slow down. In fact, it got worse. In the shower, I’d rinse out the shampoo, and clumps of hair would fall out into my hands. Fistfuls of it! I’d find my hair everywhere — covering my sweaters, on my pillow cases, hanging from my scarves. I’d sweep our apartment and fill the dustpan with my hair that had fallen out over the previous 24 or 48 hours. Even a year postpartum, it didn’t slow down, and there was no regrowth where my hair had already fallen out; there was only a shiny white band where my hairline used to be.
My eyebrows fell out, too. They’d been thin for a long time. A few weeks before my wedding in 2009, I got a makeover at Sephora to help me figure out what makeup I should buy for the big day. “You have no eyebrows!” the makeup lady tactfully said as she penciled in some fake ones over the thin lines of my own I still had. A makeup artist at The Today Show two years later when I appeared as an “etiquette expert” was more diplomatic about it. “Wow,” she said as she looked at my finished face, “You look so different with makeup.” What she meant, of course, and I understood this by then, is that I looked different with eyebrows. Who doesn’t? By the time Joanie was a year old, I had no eyebrows left. Less than a year later, I bit the bullet and got semi-permanent tattooed brows (aka “microblading”). Now, when I wake in the morning I have the illusion of eyebrows without having to mess with makeup. That’s nice. But my hair. I’ve lost so much hair and there’s no tattoo that hides that. There’s nothing that treats this. There’s nothing I can do to make my hair stop falling out. I can style it in a way that camouflages the loss, and I can wear hats, but the minute I pull my hair back, or a gust of wind blows it out of my face, my secret is exposed.
Last year I was diagnosed with frontal fibrosing alopecia. It’s an autoimmune disorder and not my first one. I also have Hashimoto’s disease, which among other effects, can lead to the loss of one’s outer eyebrows. The alopecia is just another blow. More than eyebrows, it steals a person’s normal hairline, receding it until there’s little left but the crown of one’s hair (as you can see from the photo, I’ve lost nearly two inches from my hairline so far). It affects mainly women well past menopause. I was 40 when I was diagnosed (still years away from menopause, and a good 20-25 years younger than the average age of diagnosis), and I have not met or connected with anyone else who’s been diagnosed so young. I worry that to start losing my hair at this age means I will still have so much of my life left to navigate without hair or with very little hair. I know it’s better than the alternative — of not having much life left. This kind of autoimmune disorder, after all, is mostly a vanity issue. My health is still fine (as far as I know).
There are lots of message boards for women experiencing hair loss, and I’ve visited a bunch of them. There, women discuss wigs and headbands and makeup and microblading and styles that camouflage a receding hairline. Most of these women are cancer patients. On my worst days, I feel jealous of them. There’s treatment for what they have. They can fight and get better. Their hair will grow back and mine will continue to fall out indefinitely, years after they’ve moved on with their lives. (Maybe worse than the hair loss is feeling like such an asshole. Who gets jealous of cancer patients? Assholes, that’s who.)
I’m not fighting for my life and, clearly, I haven’t gained the perspective of someone who is. I am stuck, solely, on what I look like, on the image I want to project, on what I will look like years from now. And I struggle with this, too — on taking my good health for granted, on getting lost in my own vanity and forgetting what a blessing it is to worry about the next 50 years of my life. This is not something I want to pass on to my own children, especially my daughter — the fear of being ugly, of being so consumed with one’s own problems and appearance, of feeling so vain. If I’m going to keep losing my hair — and maybe I’ll get lucky and I won’t, but if I do — I want to do so with at least a fraction of the courage I’ve seen so many others who are battling far worse problems exhibit. But it’s a challenge — to feign confidence when you’re slowly being stripped of perhaps the biggest symbol of femininity and youth and beauty, especially when evidence of that loss is literally everywhere. In the shower drain, in your brush, on your clothes, in the broom, caught on the stubble of the person you love when you pull away from a hug. It’s everywhere.`
Maybe more than wanting to keep my hair, I want to keep my dignity. Maybe saying that, maybe sharing this, maybe stripping some of the power a secret always holds will help.
Amy February 27, 2018, 3:16 pm
You look beautiful in this picture.
Thank you for sharing such a vulnerable part of yourself. Your writing is beautiful and this was very touching.
Dear Wendy February 27, 2018, 8:39 pm
keyblade February 27, 2018, 3:27 pm
@Amy- that was my thought, too. She looks beautiful.
Tracy Zagers-Johnson January 13, 2022, 1:47 am
Thank you so much for sharing so openly. I’m not sure how old your post is, but I am in the same boat as you. I was diagnosed in my late 30s, after my second child was born, with Frontal Fibrosing Alopecia. I am 42 now and it felt like a death sentence as I too always prided myself in my hair. I havent really found anything that works and my eyebrows are pretty much non existent now too. I was so excited this holiday as I was going to have microblading done but then Omicron messed that up and I havent been able to go to the neighboring island to get it done due to the high rise in cases. If you ever hear of a treatment that works or a cure for FFA, I’m all ears. Thank you once again for sharing and praying for a cure for us all one day.
Dear Wendy January 13, 2022, 7:48 am
I’m sorry, Tracy. It’s a hard adjustment to make to accepting this. I hope you’re able to get the microblading done soon and that that brings you some comfort.
SailBobo February 27, 2018, 3:46 pm
Just a note to let you know what a beautiful post this is … (Indeed, I guess that is a lesson in beauty.)
All the Best,
Dear Wendy February 27, 2018, 8:40 pm
LisforLeslie February 27, 2018, 3:59 pm
Agreed, you are beautiful. Hair loss can be traumatic; we wrap our identity in our style and our femininity in hair. You’re not an asshole for wishing that your health issues were comprehensible like chemo related hair loss.
You can rail and recede or you can put one foot in front of the other and keep moving forward; I assure you, your kids will learn resilience through the latter approach. I watched my dad lose his ability to walk, then feed himself, then talk due to immune related illness. They have no idea what triggered it and have only a theory of what it was. He received a diagnosis but they’re not really sure that is what it was. But throughout all of it -he managed to keep a level of grace and patience. He never lashed out at people, never held a pity party. He just kept going.
So, find the grace that being in NY – you will never be the weirdest person on the block. There is a couple that I see in my neighborhood all the time – they have shaved heads. They wear matching outfits. Matching tunic and pants and shoes matching outfits. And they are still not the weirdest folks in the hood and I live on the Upper East Side – where weirdness comes in limited quantities.
You can face this bare, with wigs, with scarves or whatever works best for you. You will get pity. But only a few people will keep bringing you back to pity-land, most will return to normalcy pretty quickly. Shed the pitiers. Keep the friends.
Dear Wendy February 27, 2018, 8:46 pm
Thank you for that.
Leah February 27, 2018, 4:10 pm
Lurker, here, but I really wanted to respond to this post. Like LisforLeslie said, so much of our identity and femininity is tied up in our hair! I’ve always thought that if I had to get chemo I’d use it as an excuse to dye my hair some outrageous color that I’d ordinarily never want to commit to. Take advantage of the situation to do something I always wanted to. But, it must feel very different to slowly lose your hair over time vs all at once. If you’re not finding like-minded women to talk to who are losing their hair, you might consider reading about Spasmodic dysphonia. It’s the vocal disorder that Dianne Rehm has. It tends to affect middle aged women and can be incredibly isolating because it affects how they’re perceived/understood. I’m not sure how to connect with one, but if you can find any kind of support group for women experiencing hairloss, I’d recommend that, too. I participated in a support group while experiencing infertility and it can be extraordinarily helpful, especially when you realize you’re not alone in those “I’m an asshole” thoughts (in my case, hating all pregnant women and mothers).
Leah February 27, 2018, 4:11 pm
BTW, if you ever chose to go that route I know someone with hair loss in NYC who found her favorite wig at, of all places, Macy’s. There was a very discreet wig room. It was pretty affordable, too.
J November 9, 2019, 9:01 am
Hi Wendy. We’re in the same boat. 🙂 I’m 41. My FFA started after my two kids were born…in my early 30s. I recently went to an FFA support group meeting, where I estimated that fewer than 10 of the 150 people were “young” women. The vast majority were post-menopausal. It’s very confusing :-/
I’m fearful of the day when I can no longer hide it (I’m not sure I’m doing such a great job of hiding it now, although like you, I consider my new eyebrows a major blessing).
I’m frustrated that doctors and dermatologists have no explanations and no answers.
I took things into my own hands this year, after reading a bunch of books about autoimmunity, and saw a functional medicine practitioner. We made major changes to my diet, and I now am on the AIP diet. I am not sure yet if it’s helping with the FFA, but it’s helped with many other complaints.
Good luck to you!
Dear Wendy November 9, 2019, 9:09 am
Thanks! I definitely went through a mourning period when I was first diagnosed, but it’s been a few years now (almost three, I think?) and the hair loss has stabilized and I’ve even seen some re-growth, which I was promised by everyone was totally impossible. I don’t expect much regrowth but I’m now hopeful that maybe I won’t lose too much more, at least for a long time. I don’t think about it much anymore, except when I’m outside on a windy day and my secret is blown (pun intended). Good luck to you, too!
Dear Wendy February 27, 2018, 8:54 pm
I’ve been avoiding the support group path for now just because it’s something I try not to think about too much, but I will definitely keep the suggestion in my back pockets. I belong to a couple support groups on Facebook for something else and they were helpful for a while when I was first seeking info and connection and then it got overwhelming. But I like knowing theres’s a group of people I can go to if I want to vent or ask a specific question or get feedback or advice about something.
csp February 28, 2018, 1:12 pm
Support groups can be great but they also can allow you to wallow in your pain too. It is a tricky line to walk.
Tanya February 27, 2018, 5:05 pm
Hi Wendy, I wrote to you a while ago about the subject, so I just wanted to let you know that you are not alone! I also have Hashimotos and have been diagnosed with the same kind of alopecia. I also had the experience of post-partum, hair loss, being absolutely manic between work, 2 children and domestic hoo-ha, barely looking in the mirror… to one day find that my eyebrows were gone and I had a hairless band around my face. So everything you said absolutely resonated with me. There are days when I feel like a freak. Also angry at myself for letting myself get to that point from lack of self-care. But as that’s all water under the bridge, as my dermatologist- tricologist says, the body is actually very wise, if it hadn’t been attacking the hair follicles, it would have directed its distress at the heart, so I guess that’s something to be grateful for!! And yes absolutely, if you put this on a scale of crappy things that can happen to you, it’s quite low down. But still, psychologically it’s tough… If I can offer any advice, it would be to see a functional medicine doctor, all of this is evidence of inflammation running rife in your body, and that unfortunately is a precursor to disease. I don’t know if you remember, I mentioned having to cut out a whole lot of foods to try to tame the inflammation. I have not gotten to the bottom of the problem (did I mention work, 2 kids, running a household;-)) but I have managed to stop the continuation of the hair loss purely by cutting out the reactive foods, which is a start, although not a solution … The last thing I can share is that “when the time comes” (I too have menopause ahead of me), there is the option of having a real-hair weave (I know, moral issues potentially to be considered) woven into your hair which needs regular upkeep and isn’t cheap. I do know of someone who has one in real life and is extremely happy with the result… so it’s not just a marketing scam… Thank you so much for sharing your story and being brave enough to include a photo. I wish you all the best.
Dear Wendy February 27, 2018, 9:01 pm
Thank you for all this! Definitely good advice to see a medical doctor and I have an appointment for a full physical next month and will discuss all this then. I do thin stress has played a role in my hair loss, or at least in triggering the inflammation. From the time Joanie was about three months old, it was one thing after another in our family, culminating this fall with the purchase of our house, which included a lot of stress. Things are finally settling down as of maybe eights weeks ago. But it was pretty much two solid years of pretty intense stress that I did my best to stay on top of, but as you said: with two kids and work and running a household, self-care falls through the cracks, which makes stress-management so much harder. things are easier now; I am keeping fingers crossed that helps improve the hair situation.
Tanya February 28, 2018, 3:43 pm
Yes, massive amounts of stress does the body no favours and wreaks havoc in the gut (definitely agree with the poster below on gluten and probiotics). Sustained high stress levels was definitely a factor for me too. I have found yoga and mindfulness to be helpful but just don’t have enough time to do them properly. Getting enough sleep and exercise is also key but…easier said than done, for the reasons mentioned above!!
CanadaGoose February 28, 2018, 12:22 pm
It’s hard when who we feel we are does not match the reflection staring back at us. Totally normal (plus you look great but I get that is not the point). Since you mention Hashimoto’s, which I also have, I thought I’d throw a few other tidbits out for consideration since one auto-immune condition can lead to another. I know this may sound bizarre but you may wish to add highish dose probiotics into your diet. Many auto-immune (and brain) disorders might start in the gut. I work with a research organization and the science coming out in support of that is boggling and starting to hit the mainstream. By the time you hit middle age, your gut is populated not by your natural bacteria but by those ingested over time. Also, gluten mimics thyroid and removing gluten from your diet can slow the Hashimoto’s and onset of other auto-immunes. I went off gluten and started high dose priobiotics and within 2 months, my hair loss slowed and I’d dropped a bunch of weight. Who knows for sure if it’s related but it’s not out of line with emerging research and it can’t hurt, so thought I’d share for what it’s worth.
Dear Wendy February 28, 2018, 1:30 pm
Definitely all worth looking into — thank you for sharing!
Sarah March 1, 2018, 2:02 am
Gluten does not “mimic” thyroid. Celiac disease and thyroid disease can go together, but actual celiac disease is very different from the fad gluten-free diets that abound. So maybe be careful about cutting out gluten without first discussing with your doctor.
CanadaGoose March 1, 2018, 12:10 pm
Sarah, the molecular structure of gluten is similar to that of the thyroid gland. With Hashimoto’s, your body attacks the thyroid, eventually destroying it. When you eaten gluten, the body interprets it as a flood of thyroid and attacks the thyroid faster than it otherwise would. People with Hashimoto’s can eat gluten without the dire reactions of those with celiac disease, however, removing gluten can slow the progression of Hashimoto’s. Also, once you have one auto-immune disorder, your chances of developing others increases. This is according to my endochronologist and is backed up by much medical research. It is not a fad diet but one recommended to me by a medical specialist in the field. The probiotic reco is definitely me figuring it can’t hurt, based on emerging research from the brain disease specialists I work with. The wrong bacteria in your gut can weaken and perforate the lining, which allows things to go where they should not (resulting in a host of issues: see leaky gut, but also you can start finding the results of this research online).
CanadaGoose March 1, 2018, 12:12 pm
Sorry about the typo. Is there a way to edit posts?
Vicki July 6, 2019, 8:35 am
The poster above re gluten and thyroid is correct. Through a process of molecular mimicry antibodies to gluten will also attack other things such as thyroid and myelin (think multiple sclerosis) due to having a very similar protein signature.
Juliecatharine February 27, 2018, 5:19 pm
Beautifully written Wendy. You’re a gorgeous woman and will continue to be regardless of what’s on your head. I imagine that being a red head has always brought an excess of attention to your hair which is probably making this even harder. Please know that your femininity is not your hair, it’s your overall essence. I hope you find peace with this.
Dear Wendy February 27, 2018, 9:02 pm
Thank you. And it’s true about the red hair part and feeling like my identity is more closely tied to my hair than I might otherwise.
Convexexed February 27, 2018, 5:57 pm
I just want to say it is very much okay to feel that this is unfair, that this is a big loss, that this utterly throws you for a loop. Sometimes we have feelings, and those are hard enough without adding layers of feelings *about* the feelings. It sucks to have a health condition steal away something that was part of you, full stop, regardless of who in the world may be suffering more or less at any given time. It’s all a non zero sum game. So, if you want to do wigs, weaves, glitter all over your head, scarves, do it! If you want to embrace it, do it. you want to mourn a little longer, do it, if you want to snap out of it now, do it. But don’t add an ounce of guilt about how you feel. All feelings are fair game and yours to feel; it’s only our behavior we are accountable for, so unless you are actually stealing hair from cancer patients, you have nothing to berate yourself for in this.
TheLadyE February 27, 2018, 8:58 pm
Wendy, this was such a well-written and strong post. I really admire your courage, resiliency, and your candor – as well as your ability to see the big picture and especially what you want to pass on to Jackson and Joanie. Thank you for opening up to us here. You’re an inspiration.
FireStar February 27, 2018, 9:13 pm
I’m sorry you are going through this. I don’t have any words of wisdom but to say your beauty is far bigger than your hairline. I mean it quite literally (you only have to look at your munchkins to see that) but also figuratively. Who you are, what you’ve created, and what you do for people is a testament to your true self. What’s more beautiful than that?
Wendy's Sister February 28, 2018, 9:13 am
I completely agree, FireStar! I’ve always been proud of Wendy, but what she’s accomplished since starting this website, building this community, all while balancing a marriage, children, and, now, health issues is what makes her so great. This community and her smart, sweet, strong children are proof of her beauty.
And I’ve always been a little envious of Wendy’s outer beauty, too. Still am!
Dear Wendy February 28, 2018, 1:33 pm
Aww. Thanks, sis.
rocketgirl February 27, 2018, 10:26 pm
Ditto to what everyone else said. You are an amazing, wise woman. It is totally alright to feel bad about this! And compare! Each person’s journey is their, so don’t discount what this means to you . If there are days you need to wallow, do it. And then you can pick yourself up again and take a step.
Amy February 28, 2018, 2:20 am
I applaud your openness and beauty in sharing this! I hope it helps other women who feel the same way. And for what it’s worth, I have two younger sisters both under age thirty who have Hashimoto’s. So it definitely gets diagnosed in younger women too! Maybe they just aren’t as vocal about it yet.
Dear Wendy February 28, 2018, 9:14 am
Oh, I was referring to frontal fibrosing alopecia being particularly rare among pre-menopausal women, not Hashimotos (I have both, and they are related in that they’re both autoimmune disorders that affect hair production, but still separate diagnoses).
CET February 28, 2018, 8:24 am
I just wanted to let you know I also have Hashimotos and tons and tons of hair loss. It’s crazy. I used to have thick hair and it’s sooo thin now…hardly any. Giant amounts come out every day. Like you say, I find my hair everywhere. I’m 45. I hate it too.
Dear Wendy February 28, 2018, 9:14 am
Dear Wendy February 28, 2018, 9:15 am
Thanks, everyone – I appreciate your kind words. I hate talking about this, but it also feels good to share and get it off my chest.
LisforLeslie February 28, 2018, 11:03 am
Thank you for sharing – it can be difficult to put yourself out there – especially when you’re in the business of giving advice out.
RG February 28, 2018, 11:22 am
Lurker here –
Wendy, thanks so much for sharing. Beauty, and the expectation of female beauty, can be a terrible thing.
I started losing my hair when I was 18. I have androgenetic alopiecia, or male-patterned baldness (I am a woman). I cried about it every day for many years. I worried I would never find love – who would love a balding woman?
I am 30 now. My thin hair and bald spot are still painful to look at, and I have not found love. I do feel more peace now, though, and almost never cry about my hair. I was able to let go of feminine beauty as a core part of my identity. It is ok. I am still me.
anonymousse February 28, 2018, 1:11 pm
I can’t say it any better than everyone who’s already written, but I’m so sorry that you are going through this.
I’ve always admired your vulnerability and bravery about opening up your life to the general public. ❤️ You are and will remain a beauty, with or without your hair.
Taigi February 28, 2018, 1:55 pm
What a beautifully written piece…and now I’m on the verge of tears. You are beautiful inside and out…and I love you with hair, without hair…you’re an incredible woman Wendy and you will make it through this…love you!
Dear Wendy February 28, 2018, 4:29 pm
Love you, T!
alafair February 28, 2018, 2:30 pm
This is so beautiful and well written. About a year ago I had surgery to remove a tumor. In the months that passed I lost so much hair…something I never expected since I didn’t have to do chemo. Seeing handfuls of it clogging the drain is heartrending. I actually sat there and cried one day when I realized that the reason my vacuum didnt work was because it was clogged in my hair. I only lost about half of the volume, but it felt like more. It felt like I lost pieces of me. And it was a shock to realize how much of my identity was tied up in something I just hadn’t thought I paid all that much attention to before.
I’m sorry you’re going through this. We all know you’re strong enough to get through it, and beautiful enough outside and in to find a way to shine through it. This post is a wonderful example of that.
Dear Wendy February 28, 2018, 4:31 pm
Thank you. My roomba stopped working the other day because something was caught in it. I went to pull whatever it was out — a lego I thought or some other small toy of the kids’; it was a huge clump of my hair. I feel your pain. I hope you’re in good health these days, post-surgery.
brise February 28, 2018, 3:07 pm
Dear Wendy, I am sorry for you. This happens to me too, and to so many women. Have you tried the only medicine on the market for women, Minoxidyl? I have and it works. But it is an everyday routine. If you stop using it, the new hair fall. It was at first a medicine for men, then it became very common among women. In France, you can buy it over the counter. It is not so expensive because they are many generic versions of this molecule on the market. It it harmless, very few or no side effects, but the excipient can be a bit annoying (sticky hair with some brands). I use “Bailleul”, a French generic which is fine. I definitely recommend it. My doctor told me there is no other cure than this one for women. Men can take what the pills that Trump takes, but not women. So there is a hope.
Dear Wendy February 28, 2018, 4:34 pm
Hi – I did try Minoxidyl when I was first diagnosed about a year ago. I tried it for four months along with an expensive cream my dermatologist prescribed, but neither worked. There was no regrowth, unfortunately, and my hair just kept falling out.
brise March 1, 2018, 6:39 am
Yes, I have been told it works on about 75% of patients.
Dear Wendy March 1, 2018, 8:22 am
Do you have scarring alopecia or alopecia areata? The 75% statistic is contradictory to everything I have heard and read about scarring alopecia (which is almost impossible to treat). It didn’t help me, but it’d be great if it’s helping others! I’m going to start exploring eastern medicine — acupunture and chinese herbs and see if that’s a good fit for me.
brise March 1, 2018, 9:59 am
I have no idea. I think what I have is androgenetic alopecia. This treatment definitively works for me, but I don’t have medical knowledge beyond what my doctor told me.
Dear Wendy March 1, 2018, 10:08 am
Gotcha. The kind of alopecia I have is especially difficult to treat and the belief is that the hair loss is permanent and irreversible. Most people with scarring alopecia like I have are trying to slow the progression of hair loss as opposed to encouraging hair growth, so I’m always interested if someone with scarring alopecia actually has success with any treatment meant to regrow the hair. I know there’s a much higher success rate with different kinds of alopecia though.
Rangerchic February 28, 2018, 4:53 pm
Thank you for sharing your story and I’m sorry you are going through this. I do hope you find the balance with life/work/stress you need. I don’t know if that will help with your hair but maybe it will help some with just feeling good all around 🙂
ahcounselor February 28, 2018, 5:45 pm
I second the functional medicine comment. My Hashimoto’s was supposedly under control but I was miserably symptomatic and crazy losing my hair still after having my second child. I broke down and went to a functional medicine doctor recommended to me as nothin else worked… and I’m so much better! No more hair loss. I cut gluten, dairy, and changed to a different thyroid med but it was all so worth it. Thank you for sharing your story. It is beautifully written.
Sarah March 1, 2018, 2:16 am
Wendy– great post. You’re so brave for sharing this!
carolann March 1, 2018, 3:31 pm
I mentioned iodine a long time ago when you first mentioned having trouble. I have used iodine myself. Lugol’s is good type to try. Here is an article about it you may find interesting.
I would also suggest having your hormone levels checked. I know you have other conditions you know are contributing to your hair loss, but hormone imbalance could be contributing also.
I think it is great that you are posting your personal struggle, there are so many woman who suffer from this.
Dear Wendy March 1, 2018, 3:42 pm
carolann March 1, 2018, 4:13 pm
I use a brand called J. Crow’s it is great for a lot of things. Here is the amazon review on it
The review titled “The Ultimate Pink Ribbon” has a lot of useful information about it.
I am going to try to get a copy of the book she mentions in her review.
Dear Wendy March 1, 2018, 4:28 pm
I can’t remember– do you have frontal fibrosing alopecia?
carolann March 1, 2018, 4:30 pm
I also take CBD for stress, I was getting really snippy and easily set off…but that is another discussion lol
carolann March 1, 2018, 4:37 pm
I am not sure what I have/had. I never went to the doc for it because I was changing insurance and docs. My main doc ended up being really far after I moved. Now that I have all that straightened out I am going to go in and get all my levels tested. I have had hormone issues in the past and have also suffered from anemia (on and off since I was a teen) that got really bad during my pregnancies. My youngest is three. The hair loss after my last pregnancy was pretty bad especially in the front. In the same place as yours. (not sure about my eyebrows I plucked them so much over the years that they barely grew back) The iodine helped my hair shedding a lot.
Delilah March 2, 2018, 7:44 pm
I feel for you – I’ve had alopecia areata for about 10 years – I lose quarter sized clumps of hair randomly – sometimes they are noticeable and sometimes they are hidden. I just want you to know you’re not alone!!!
Fidget_Eep March 7, 2018, 12:33 pm
I have alopecia areata as well but mine over lapped so much it looked like I had no hair. My mom would joke with me to try and raise my spirits and ask if I had cut my golf course yet. I moved to a new state and much has grown back but I still wear a wig everyday at work and a cap at home. The first time I lost a half dollar sized spot, I cried, and when I made the decision to shave what little I had left I cried. I have little to no body hair and I periodically loose chunks of eyelashes. My alopecia is related to eczema (5% of 5% of people with eczema develop it). I can finally actually brush hair again and I hope more will come in but not likely.
Dear Wendy March 7, 2018, 12:55 pm
Thanks for sharing. I hope your hair continues to grow back.
I start acupuncture for my alopecia next week with a woman who specializes in alopecia-related hair loss (she has alopecia herself). She has a very high success rate, even with my kind of alopecia, which most western medical professionals pretty much say is permanent and irreversible (meaning the hair that’s been lost never grows back), so I am cautiously optimistic. I figure if nothing else, regular acupuncture for a few months will help manage stress, which I know has bene a big trigger for the hair loss.
Helen March 3, 2018, 7:19 am
Dear Wendy, thank you for sharing. I wish you a journey of all kinds of discoveries of self care to live thrivingly with your diagnosis.
You are beautiful.
FireStar March 11, 2018, 9:19 pm
Just saw this. I’m sure you’ve already researched this every which way but if a doctor in the article speaks to you maybe you can follow up on them in particular.
Dear Wendy March 12, 2018, 8:13 am
Lori June 17, 2018, 8:03 pm
I hear ya… I have FFA too and I’ve gone through all of these emotions, including feeling like an asshole for feeling jealous of people with temporary hair loss. Mine started in my 40s before menopause, but I was on the pill, so I have no idea when my body really wanted to start menopause (I’m 54 now). There is a facebook group I belong to, and there are lots of younger women who have it. I guess I’m lucky that I am older and married, and I do try to remind myself that I am otherwise healthy and probably the cancer patients would trade with me any day. It makes me feel horrible and vain, and some days I’m sure I’m just going to shave it all off and go with it. Anyway, no real words of wisdom. FFA sucks. Hang in there and know that you are beautiful, with or without hair.
La January 16, 2019, 6:12 am
I feel you have written about me! I have just been told I have FFA. Devastated. How do I cover all the hair loss in front and above my ears?
Dear Wendy January 16, 2019, 9:05 am
I’m sorry about your diagnosis. It’s a hard thing to come to grips with, and there’s a period of mourning, I think, so be gentle with yourself. I’m lucky in that my hairless has been pretty easy to camouflage with bangs/ strategic hairstyling. I also just kind of… don’t really care so much anymore. But I’ve had two years now to get used to the diagnosis and get some perspective around it and to treat it in a way that feels a teeny bit affective (I treat with acupuncture, mostly, and some changes in diet ad stress management). There’s a support group on Facebook that you might find helpful. I, personally, found it depressing so I left (I have found that for my wellbeing I do better with support that is more positive and optimistic as opposed to wallowing in misery, if that makes sense, but I do see value in at least comparing treatments and experiences). Good luck to you!
Laurina Johnson March 10, 2019, 5:30 pm
Hi there, I was diagnosed at age 35 by 45 it got worse, now at 52 it stabalized but have no eyebrows and patchy hair. I wear a topper when I got out and part my hair to the side or wear a headband when not wearing a topper. I cried so much but then it is what it is. I am in Chicago.
Danielle November 2, 2019, 2:28 pm
I was recently diagnosed with frontal alopecia. I am 47 and noticed my hair loss in the shower, etc., about 4 months before I did anything and I am so angry thar I let it go so long. My hair will never come back. My husband, my family, my friends, etc., say they can’t notice anything and I feel guilty for being such a baby about it as it is a vanity thing, not a health issue. I have been getting steroid injections every 6 weeks which is supposed to stop the progression.
Can anyone give me ideas on hair styles?
Holly February 17, 2021, 6:49 pm
I was just diagnosed as age 35, but my doctor is sure I have had it for 4 years undiagnosed. I am not sure what I am going to do. Thank you for sharing your experience with frontal alopecia.
Gaynor May 12, 2021, 3:41 am
You could be me. My hairline is exactly the same. My eyebrows are non existent . My biggest enemy is the wind! How I hate windy days. I’m quite lucky though as my hair is really thick so I can cover it with a fringe but I have lost at least three inches of my hairline. I had my eyebrows tattooed on which is a great relief because I felt a bit like an alien without them.
Next month I’m going to the Lucinda Ellery hair clinic to get an intralace hair piece fitted . It’s horribly expensive but I’m fed up of not doing things because I’m worried people will see my massive bald forehead.
Lina February 3, 2022, 1:12 pm
This spoke to me so much: just 40 ans diagnosed this week, and I’m struggling for pretty much the same reasons: it stings deep, the practical worries about the future (how will I tie up my hair to swim with the kids while retaining my dignity) and mental health compounded by the guilt because as you say it’s a vanity issue…
I’m already dealing with another chronic, non-life-threatening condition that’s been hitting my self-esteem and mental health bad…
May I say though, as others have, that you look beautiful!
Thanks for sharing something that feels so shameful for most affected…
Jessica May 5, 2022, 11:28 pm
I have the same condition. I cried after I received a second opinion. I was wondering if you had any suggestions for hair styles. I hate bangs but think it’s the only options.
Dear Wendy May 6, 2022, 11:04 am
Yeah, bangs are the way to go. And long, face-framing layers. I’m sorry for your diagnosis.
Rebecca June 21, 2022, 10:18 pm
I have a very similar story and hairline! Lost my eyebrows over the course of 1-2 years following the birth of my last child when I was 41. Diagnosed with FFA a couple years later as my hairline began to recede.
I am curious how this has progressed for you and whether accupuncture was helpful. My FFA has slowed quite a bit, but I am just on the verge of beginning Plaquenil on the recommendation of a second dermatology consultation. I hate to risk taking a med that could also worsen the condition or cause other problems.
Pamela Aparicio October 6, 2022, 6:36 pm
I’m 25 years out. Started loosing my hair at 40 after having my two children. I also have Hashimoto’s and Raynaud’s disease. The only thing that halted it’s progression was hydroxychloroquine. My hair continues to thin but the frontal march back has subsided. I agree with taking care of your immune system with alternative medicine if possible however it didn’t work for me and I tried them all. I was also prescribed finasteride and minoxidil. If it helps any, I still saved enough hair to have some bangs from hair cut in the middle of my scalp and pulled forward plus keeping my hair short and it’s not the end of the world at 65yrs old. I feel for you and hope a more effective cure is around the corner. The new med in trials is the one that works for the alopexia that Jada Smith has. I don’t remember the name but your dr would know. It shows promise but the trials have only started. Good luck!