Head Over Heels – My Trek with Alopecia

The words of Christy Bailey touch an object in my heart. I use the word “object” because I don’t really know what that object is. It is something that is there with a presence that cannot be denied, but is it a thorn, a spike, a sword, or a shield? Perhaps it is all those things.

Christy Bailey was a woman with alopecia areata, an autoimmune condition that attacks the hair follicles. For the most part, it is idiopathic. No one really knows what causes this condition, other than the fact that the person with alopecia areata has an immune system that has identified that person’s hair follicles as something that it needs to attack. The result is unexplained hair loss that can be partial, patchy, or can progress to the severities of alopecia totalis (total loss of all scalp hair), or even alopecia universalis (total loss of all hair – scalp and body).

Christy Bailey was a woman who thrived in the presence of adversity. She joined the Peace Corps, ran marathons, organized and participated in triathlons, and wrote a memoir that has inspired many, especially me, a woman who is living with alopecia. Christy learned to embrace her condition. In the beginning, she camouflaged her alopecia with wigs but eventually chose the freedom of wearing a panuelo, a scarf-like headwrap that gave her distinction and individuality. How I wish I could have known her! Tragically, two years after Christy finalized her memoir, she was diagnosed with inflammatory breast cancer, a disease that would end her life far too soon.

I see my recent set of circumstances as a reflection of Christy Bailey in reverse; a mirror image, but a mirror opposite at the same time in the sequence of events and choices that we each made in dealing with our hair loss. I first noticed my symptoms of alopecia areata in January 2025. I woke up one morning to see what looked like a bird’s nest lying on my pillow. Yet it wasn’t a bird’s nest at all. It was a sizable portion of my once thick, wavy hair that had suddenly decided to wave goodbye to me. This came as a shock out of nowhere. It was a horror that brought forth a full range of emotions. However, this was not my first rodeo with hair loss by any means. In 1995, at the age of 38, I was diagnosed with two simultaneously occurring types of breast cancer – infiltrating ductal carcinoma and Paget’s disease of the nipple. Aggressive chemotherapy with a combination of drugs that included Adriamycin, also known as doxorubicin, or the “Red Devil,” made sure that I was completely bald within fourteen days of beginning treatment. The hair loss was difficult, but I had a great wig that made me feel like “me” through it all. I was assured that my hair would grow back once I had completed chemo. Indeed, it grew back with an abundance and energy all its own! I ended up with thick curly hair that became my pride and joy, a symbol of triumph and health.

My onset of hair loss in 2025 was a whole different story. I immediately went to my dermatologist, who took one look at my scalp with its telltale circular bald spots and said without doubt, “alopecia areata.” The condition is a localized autoimmune disease for which there are treatments, but no definite cure. We began a series of corticosteroid injections directly into my scalp, a treatment to suppress the overactive immune response that presented itself as chronic inflammation and hair loss. In the meantime, I also underwent testing that included scalp biopsy, extensive bloodwork to rule out other autoimmune conditions, and even a CT scan of my brain. Fortunately, the results all came back normal.

Alopecia is often triggered by stress or medication. The only medication I was taking was Synthroid for Hashimoto’s disease, an autoimmune form of hypothyroidism that I had been diagnosed with many years prior. But I had been taking Synthroid for more than twenty-five years, and it was being closely monitored with bloodwork to maintain the correct dosage. My hypothyroidism seemed to be so well controlled that I often forgot I even had it, other than the fact that I had to take one tiny little pill each day. However, if you have one autoimmune disease, like Hashimoto’s, you have an increased risk of developing another, and that includes alopecia areata. It doesn’t necessarily mean that one condition caused the other, but the two may exist as comorbidities.

As far as stress goes, even though we live in the beautiful paradise of Marco Island, life on occasion still brings a few bumps in the road. But I had always been able to navigate that. Let’s face it, I had slayed a rather large dragon when I beat cancer thirty years prior. I had certainly encountered and conquered stress before. I always knew how to put one heel ahead of the other to move forward one step at a time. I have faith. I have a wonderful home with my amazing husband, Phil, and our crazy, but loving mini Goldendoodle, Trek. I had an abundance of friends and meaningful purpose as the 2024-25 president of the Marco Island Woman’s Club. What more could a gal want?

Answers. That’s what I wanted. Solid answers. Why was my hair falling out in massive clumps? Why did my immune system suddenly kick into overdrive, attacking my very own healthy cells?

According to the National Alopecia Areata Foundation, approximately 2% of people across the world will experience alopecia areata at some point in their lifetime. Nearly seven million people in the U.S. and 160 million worldwide currently have alopecia areata, have had it in the past, or will have it at some point in their life. About 700,000 people in the U.S. currently have some form of alopecia areata. People of all ages, genders, racial, and ethnic groups can be affected by it. The hair loss often appears during childhood but how, why, and when can be different for everyone. More than 80% show signs of the disease before age 40, and 40% experience symptoms by age 20. For me, it didn’t rear its ugly head, no pun intended, until I was 67.

Alopecia areata is a polygenic disease related to multiple genetic factors. But not everyone with the genes develops the disease. The disease is complex, to say the least. Scientists know it is an autoimmune disease, but they do not know why the immune system attacks the healthy hair follicles of some people with these specific gene variations and not others. About 20% of people with alopecia areata have at least one family member who also has the disease. To my knowledge, there is no one else in my family who has ever experienced this.

The good news for me was that the corticosteroid injections appeared to be working in the beginning. My hair was growing back and filling in slowly, but surely. In the meantime, I fought off wearing a wig by wearing hats instead. I had a fedora in every color for every outfit and Panama hats galore! The thought of wearing a wig brought me back to the time when I was battling cancer. Emotionally, I just could not go there.

The summer of 2025 was awesome for me. I had been named one of the Portrait of Hope Ambassadors of the American Cancer Society’s signature event, Making Strides Against Breast Cancer of Southwest Florida. It was an honor that absolutely thrilled me! I was part of a photoshoot for the event that included hairstyling and makeup. My hair was still super short and much thinner than before, but the stylists were great and I was more than happy. Little did I know that less than a month later, I would be completely bald.

In September 2025, I felt a smooth patch of baldness when I was shampooing my hair. I went straight to my dermatologist, who injected my scalp with good old Kenalog, and I thought for sure that everything would be ok. But alopecia had decided to come back with a vengeance that nothing could stop. Alopecia areata had now progressed to the severity of alopecia totalis/borderline alopecia universalis. In other words, I eventually lost not only the hair on my head, but also my eyelashes, my eyebrows, and even the hair on my arms and legs.

My hats were no longer enough to disguise my situation. I finally had to embrace the art of wearing wigs again. And embrace it, I did! I now have four wigs that proudly sit on their stands on a shelf in my closet when they are not propped upon my head. I even gave them names – Wiglet, Wigwam, Little Miss Wiggles, and Hedwig. I learned the art of creating eyebrows and applying false eyelashes. I describe it as an art, because believe me, it takes creativity, patience, and precision to use one’s face as a canvas. Alopecia is now a part of my life that is here to stay, at least for now. I may as well find fun and maybe even a little joy in it. I love it when someone tells me that they love my new haircut or when they remark on what long eyelashes I have. Sometimes I just smile and say thank you. On other occasions, being the brutally honest soul that I am, I have been known to share my story with total strangers.

There are new treatments on the horizon for alopecia. JAK (Janus kinase) inhibitors are a class of medications that target an overactive immune system by blocking the enzymes responsible for inflammation. I was offered the opportunity to try Litfulo. However, when I read the list of side effects and saw the mention of increased risk of lung cancer and lymphoma, I declined. It is a personal choice that I made for my life right here, right now. But I am optimistic about the success that JAK inhibitors may bring to others, particularly younger people and children who are faced with alopecia.

I still live with the hope that someday my hair might begin to spontaneously grow again. It is a possibility; a rare one, but a possibility, nonetheless. My scalp biopsy showed that my condition is “non-scarring” alopecia, meaning that my hair follicles are still intact but dormant. They are miniaturized and stuck in the “resting phase” of the hair growth cycle for a reason unbeknownst to me.

Throughout my trek with cancer and now alopecia, I have learned that there is a tremendous source of healing in our universe. Some call it science. Others call it energy. I call it God. I welcome it with prayer. I feel it as hope, strength, spirit, and love.

The most challenging time of my day is now the time that was once my brightest. In the years that followed my fight against cancer, I always cherished that special time when I first awakened and my heels hit the floor to begin the adventure of a new day. That’s when I knew I was alive! Now, that initial moment of awakening brings a harsh jolt of reality. I see my image in the mirror with no hair. The face that I have lived with for 69 years seems erased by the loss of my eyebrows and eyelashes.

But that hollow feeling only lasts a second or two. I take a deep breath and smell the aroma of coffee that my early-rising husband has already prepared and is waiting to serve to me. I hear Trek playing with his squeaky orange ball, waiting for me to toss it for him. That’s when I know that it is going to be a fabulous day. Hair or no hair, I rejoice in living; not only to survive, but to thrive! I am head over heels in love with this amazing life!

For more information about alopecia areata, please visit the National Alopecia Areata Foundation at https://www.naaf.org.

Christy Bailey’s memoir, Headstrong: Embracing Alopecia and Becoming Panuelo Girl, can be purchased at Amazon and other select booksellers.