The completely innocuous beginning of my journey into hair loss cannot be pinpointed. There were early signposts. Inoffensive and unobjectionable, they were not noted. One day, I did notice I no longer had hair on my arms. It certainly didn’t seem like a big deal. Then, I noticed I didn’t have hair on my legs. I surmised the loss of hair on my limbs was a natural part of aging.

Next, as I innocently proceeded on a journey I didn’t know I was on, I noticed that I had a small red inflamed spot on the left side of my front hair line. It didn’t itch. It just looked odd. The spot spread, and it looked as if pustules were forming. I tried several home remedies for treating the area. Then, I noticed that hair would fall out when these strange looking spots healed.

On April 6, 2006, I consulted a dermatologist. I somewhat sheepishly told him about the home remedy I had been using: Listerine. Seriously, I applied Listerine to these inflamed areas of my scalp! I did this because I had concluded that putting an antiseptic on the weird looking sores would be better than doing nothing at all. I think the doctor thought I was a nut job. I can forgive him for that. I’m sure he hadn’t seen anyone else that day using Listerine to treat skin problems. He asked me if I had tried Windex. Funny.

The doctor said he didn’t know what the problem on my scalp was because he’d never seen it before. He thought it might be psoriasis. I have a history of psoriasis. I didn’t think it presented like psoriasis. He didn’t disagree with me. He concluded that he didn’t know what else those sores could be. He gave me a prescription for a topical and sent me on my way. He never suggested that I schedule a follow-up to see if my problem was resolved by using the treatment he prescribed. I felt dismissed but also felt that my symptoms did not merit a legitimate medical concern.

The topical cleared up the worst of the inflammation. This made me happy. I did notice the hair continued to fall out when the area was healed, and that it did not regrow where the pustules had been. My hair continued to thin. I fretted, but again I surmised it was a part of the aging process. I noticed the front part of my hairline did not have the volume that it once had, and I found my old hairstyle no longer worked with the thinner frontal hair.

My biohair over the years is shown here in photos that span from 2004 - 2010. The bottom right photo was taken in 2006 when I first consulted a doctor. The top right photo was taken in 2009.

In May of 2010, my youngest daughter died unexpectedly. Just months after her death, my hair fell out enough that fine strands of silver hair covered my clothing. I called it tinsel and joked, “The tinsel is falling off the old tree.” According to my doctors, the loss was temporary and caused by shock and stress. “Your hair will come back,” they said. The hair loss was significant, but not noticeable to others.

One morning in July of 2011, as I was putting on my makeup, I noticed my eyebrows were completely gone. They’d been there the day before. Now, the loss of hair I had been experiencing for the last five years seemed anything but innocuous. I saw my doctor and told her about continued thinning of hair and sudden loss of eyebrows. She asked, “Have you been plucking them?” It was a legitimate question. Perhaps, she thought my stress had manifested itself with trichotillomania, a hair-pulling disorder. I decided it was time to visit a new dermatologist.

A compassionate and supportive doctor, she was also a friend. She thought I had a form of alopecia triggered by stress. She’d never seen alopecia that presented like the symptoms she saw on my scalp. The sudden loss of eyebrows was a mystery to her. She thought we should take a wait and see approach. I went home from the appointment and consulted Dr. Google. Alopecia, a word I couldn’t even pronounce, was not new to me. I’d heard it before, but it was a word I could never remember. I wrote this term down on a yellow sticky note and placed it by my computer. I practiced saying it. I didn’t want to forget the name of the condition nor how to pronounce it. Believe me, since that day, there has been no forgetting!

Not long after that appointment, I saw my endocrinologist for a routine appointment and asked her for an opinion. She said that my thyroid was not causing my hair loss but concurred that stress could have triggered problem. She advised me to get the scalp biopsied. Heaven only knows why it took me a year to get a scalp biopsy. I was in denial about my hair loss. I believed it was temporary. I believed the loss would stop. I believed my hair would grow back.

Meanwhile, my hair continued to fall out. Finally, in March of 2013, a full seven years after my first visit to a dermatologist for hair loss, I saw another dermatologist. After his initial examination of my scalp, he diagnosed me with frontal fibrosing alopecia. He added that he would have to biopsy my scalp for a solid diagnosis. I had never heard of FFA before. The biopsy came back confirming FFA and lichen planopilaris.

My bio-hair in 2013 - the year I was diagnosed with frontal fibrosing alopecia, a scarring alopecia.

He sat me down and painted a grim future for me and my hair. He showed me pictures he had downloaded from the internet. All I could think of was, “Surely this won’t happen to me.” The new doctor said that there was really no treatment to cure the condition. He said that the treatments that might slow it down were not effective and had side effects I may not wish to experience. I chose not to take the oral medications but used the topical Clobetasol prescribed to help with the itching, pain, and soreness.

In 2013 when I was finally diagnosed with FFA, I realized that I had suffered from terrible itching on my scalp for several years. Dealing with loss and grief, health problems of another nature, I did not pay much attention to what was going on with my scalp. I had lamented my thinning hair, but I still believed it was a temporary situation. The trajectory of my journey changed the day I learned about the disease that was not only taking my hair, but also leaving scars behind. I had to determine out a way to accept and cope with the diagnosis and the changes it brought to my journey through life.

The devastating emotional and psychological components of hair loss are not often addressed by the medical profession. My own personal journey with hair loss has been made easier by the support and knowledge I have gained from the Scarring Alopecia Organization.

In June of 2016, I attended the 7th International Patient-Doctor Conference sponsored by SAF in New Orleans, Louisiana. It was probably one of the most important things I have done for myself since I began this journey. There, I learned I was not alone. I met some of the most amazing, supportive, and smart men and women I have ever known. Like me, they too are learning to live with scarring alopecia. At the conference, we armed ourselves with information to help fight the battle against hair loss. We learned from those doctors whom have dedicated themselves in helping us on this journey.

My hair loss in July 2016, one month after I attended my first SAF Conference.

United, we are joining the battle to win the war on scarring alopecia. Our stories give strength to each other as we journey down this road together. Our stories unite us and make us feel less alone. Our stories validate our experience. At times I think we all feel very alone in a world where it seems every head around us is covered with hair. I hope my story helps someone else feel less alone.

Are you worried about sudden hair loss? This post might help you decided if you should inquire further in to the reasons for loss, and what you should do about it.

This post will focus on the importance of seeking early diagnosis and treatment for hair loss.

A summary of the beginnings of my hair loss journey:

In the late spring of 2010, after the sudden and unexpected death of my daughter, I began to notice extensive hair loss. At first, I was not concerned. I’d noticed a bald place developing at top backside of my head several years earlier, and while I did not like the optics, I chalked it up to thinning hair due to aging. My mother had thinning hair as she aged, so I assumed I would too. I took vitamins and tried styling options, but mostly I ignored it until I noticed an acceleration of loss of hair when I washed my hair. I also remember that after my daughter’s death my clothing was covered with silver white strands of hair. I particularly remember my signature black hoodie, the one I wore all the time, covered with so much hair that my neighbor, and kind and caring woman, would actually begin picking the hair off my hoodie as she lovingly asked how I was doing. She commented on my hair loss, wondered if I had checked it out with a doctor as she consoled me over my recent loss. She also alerted me about getting some answers for the hair loss. She had gorgeous thick silver hair, striking in its style and color, and she too had known great loss and stress, so I valued her advice even as I dismissed my own hair loss by saying, “Yes, the tinsel is falling off the old tree.”

I had more going on in my life at that time to worrying about my hair, so it didn’t make an appointment with a dermatologist right away. In fact, I didn’t even know who I should consult for hair loss. At the time of this acceleration of hair loss, I was deeply grieving, in shock over my daughter’s death, and I also began to have arrhythmia symptoms in my heart, and worsening GI symptoms. I was seeing a mental health therapist too, so the prospects of seeing one more doctor did not appeal to me.

When I did consult doctors regarding the hair loss, I was told the loss was from stress. “Your hair will come back. Don’t worry,” I was told. Yes, stress was certainly involved in my hair loss, but it was not the total reason for it.

In a nut shell, after the initial dismissive answers for why I was losing my hair and experiencing other worrisome scalp symptoms, I went on to consult a number of uninformed and dismissive doctors, including dermatologists over the next three years between 2010 and 2013. In that timeframe, the continued hair loss, and scalp redness, itching, flaking, and pain I was experiencing could no longer be ignored by me. None of these medical professionals took me too seriously and continued to say my hair loss was stress related. Even as I lost my eyebrows, suddenly and completely, my primary care doctor seemed dismissive and asked if I had been plucking them. (Yes, she did! That is exactly what she asked.)

Finally in 2012 I spoke to my my endocrinologist about my hair loss as I was seeing her for a regularly scheduled appointment for treatment of Hashimoto’s thyroiditis and pre-diabetes. She clearly stated she did not believe thyroid condition, age, nor genetics were the primary reason for my hair loss and advised me to get a biopsy of my scalp. It took me more time than it should have to act on her advice, but finally sometime in 2013, I saw a new to me dermatologist and requested a biopsy. Please note that I requested a biopsy. I was prepared to demand one if I had to do so. I was not accepting anymore dismissive answers. My endocrinologist had stressed that I must get to the bottom of my problem by having a biopsy.

I didn’t know it then, but with a diagnosis of my condition, I was about to experience a completely new learning curve regarding treatment for the condition.

The results of the biopsy came back with a clear diagnosis of lichen planopilaris/frontal fibrosing alopecia or LPP/FFA). I had never heard of such a thing. He showed me photo of what to expect as my condition progressed and said there was nothing at all that I could do about it. Almost as an afterthought, he said there were some treatments, but they were not proven effective and caused side effects I did not want. I asked what the treatments were, and he said plaquenil was sometimes prescribed, and clobetasol was a topical treatment sometimes used to quiet symptoms. I told him I had used Protopic or tacrolimus, a topical medication that had been prescribed by a doctor I’d seen earlier about very sore and inflamed follicles. This new doctor said I could continue to use tacrolimus on occasion for symptoms and he added clobetasol solution to my treatment plan, but did not include any solid instructions on how to use it. Basically, he said, “You can try this too, but nothing will stop the loss.” He did not want to prescribe plaquenil because of the side effects.

Post-diagnosis, I promptly went into denial believing I would never lose all that hair like the ladies I saw in his exhibits, and I guess I trusted him enough to go with what he said and looked no further into the diagnosis because frankly, I had other issues that seemed more looming than my hair. I remained firmly planted in the land of denial even as my hair fell out all the more.

When I think back on that time, I was dealing with so much loss that my sadness, while at time overwhelming me, hair loss was not the only loss I was dealing with. As the hair fell out my very identity was being altered. I no longer recognized myself in the mirror as my hairline marched ever upward and backwards. My eyebrows were totally gone, and I felt that my face disappeared with them.

My hair was more than noticeably thin, it was patchy. I could no longer hide my loss. I also had such redness along my scalp, and such flaking, that I was embarrassed over my appearance. I remember feeling helpless. Helplessness gave way to hopelessness, and as the hair fell, so did my mood. I became withdrawn, afraid, anxious, and socially isolated.

Finally, I stepped out of my isolation and wrote of my hair loss on my blog, a place I previously mostly wrote about family and grief. At the same time, I also connected with an alopecia site on the internet and began to learn a bit about my specific type of alopecia. I still could not find a doctor who knew how to treat FFA.

By writing on my blog, I connected with others who read my posts or sent them to friends. From there, I learned there was a support network for my condition: Cicatricial Alopecia Research Foundation (CARF). I contacted the foundation, signed up for their newsletter, and attended the conference they held in New Orleans in 2016. That is when I finally really learned about scarring alopecia from the experts. This was nearly three years after my original diagnosis, and ten years after I first began to show symptoms for which I had actually consulted a dermatologist. (My initial consultation for scalp problems was not because of hair loss, but was for an inflamed hair follicle which clearly showed folliculitis, but again, the doctor was dismissive as he also stated he had no idea what was happening on my scalp.)

Remember that doctor who diagnosed my condition? He saw me again six years later. In that time, he had learned nothing more about my condition, but I had.

Let me tell you about a doctor’s visit I had last week. I was consulting with a kind and knowledgeable physician assistant about the migraines and dizzy spells that have plagued me for months. I told him about my hair loss and how I was also experiencing scalp pain after years of not feeling such pain.

In the conversation, I mentioned the dermatologist who had diagnosed me because I thought he was associated with the practice I have used for the last four or five years. I told him how Dr. So and So had said there was no treatment for my condition. I went on to tell him that I had seen this same doctor years later when I had been sent to him again because he had joined my primary caregiver’s medical practice. At the 2019 encounter with that original diagnosising dermatologist, I was experiencing a sudden and unexplained flare on my scalp that presented as inflamed and painful pustules in three different locations throughout my head.

I told the PA how in that appointment, I confronted the dermatologist by asking him to observe how I had lost all of my frontal hair because I had not received early intervention for my loss when I initially sought treatment from him years before. Sadly, the man was still uninformed about FFA and had never bothered to learn more about the condition than he knew eight years before even as he continued to practice dermatology. He commented and commended my for my vast knowledge of FFA. Even at that appointment, he did not biopsy to seek the reason for this flare, and I didn’t think to ask for a biopsy. He clearly did not know how to treat a reoccurrence of troubling symptoms.

At that point in my story, the PA interrupted me, “And that is only one more reason why he is no longer a part of our practice.” Unknown to me, this dermatologist was no longer affiliated with my primary care practice . To my knowledge that means he has been associated with at least three practices in two different states since I’ve known him.

I guess I feel a sense of believing some justice has been served knowing that others in the medical community of which I am a part held a high standard of care high in the practice where I go for medical treatment for other concerns and removed a practitioner giving substandard care. As always, I felt seen by this PA. I knew I was heard. I knew I was respected. I felt believed. I felt upheld in my feelings of anger over the lack care I was given. I appreciated that he listened, gave me compassion, and then told me that the doctor would no longer be giving bad medical information in the capacity of being associated with this clinic.

Fight for your hair.

My point is: seek the best medical advise that you can if you begin to experience hair loss Don’t be dismissed with an “I don’t know” diagnosis. Find another doctor if you are able to do so. Fight for you hair. In the end, the outcomes may not be what you hoped for, but at least you will know that you armed yourself with the best advice and treatment you could get. You will know you fought to the best of your capability and capacity.

Coming to terms with hair loss

I long ago came to terms with this bad treatment plan (no treatment plan) I was given. Hair loss acceptance is a process and a journey. I have met the most amazing community of intelligent, beautiful, informative, and supportive people because of my hair loss. I am mostly at peace with where I am in my journey.

If you are suffering from hair loss, know that I care. I am here to support you on your journey to diagnosis, treatment, and acceptance of the condition. Please feel free to contact me by leaving a comment. If you have a friend or a family member suffering from hair loss, please send them a link to this post. I hope my post has been informative and helpful for all who experience hair loss.

Also, please sign up for my newsletter. I will be writing more on this topic on the blog, and in my newsletter.

I’ve added a few photos at the bottom of this post to give you some visuals about the hair loss I experienced.