Frontal Fibrosing Alopecia

Navigating the Early Stages of Frontal Fibrosing Alopecia: A Personal Journey

For many of us over 60, changes in our appearance are expected: a grey hair here, a wrinkle there. But when these transformations hint at something more, it can be unsettling, confusing, even worrying. This is a tale of my encounter with such a change – the onset of Frontal Fibrosing Alopecia (FFA). As I start this in January 2024, I am 61 years old. My birthday is in April.

Who Stole My Cowlick?

The journey began innocuously enough during a simple conversation.

I was talking to my daughter on Zoom shortly after she gave birth to a new daughter. She lives in Singapore, so our relationship is largely conducted across screens. She said, “Hey, Mum, Maddie has your cowlick”.

Poor Child! She’ll have a lifetime of adults licking their hands and trying to stick it back down and warning hairdressers to blow dry that first before it dries.

I raised my hand to touch the cursed cowlick only to discover it was no longer there. At the time, I thought that was a bonus. I’d always hated it, and I thought perhaps it had settled.

A cowlick is a tuft of hair that grows in a different direction from the rest of the hair. Presumably so called because it looks like a cow licked your forehead and sent a bit of hair wayward.

Lindsay Lohan works with hers but if you have a centre parting and fringe, a cowlick will spoil the look unless you straighten it when you wash it.

Lindsay Lohan - Photo by PR Photos
Lindsay Lohan – Photo by PR Photos

I would soon learn that what I had thought was a minor victory over my troublesome hair was the start of something much more complex.

The lack of a cowslick played on my mind, and over the next few weeks, I was constantly examining my hairline. Part of the confusion stemmed from the fact that I could see that my hair was receding, but I also had new growth.

I had realised, and I was further taking notice of the fact, that I was struggling more to style my hair. I only wash my hair once a week, but mostly, it looked ok on day one, but I put it up for the rest of the week. I do a lot of sport, so I wear it up, in a plait or under a cap.

I have never had easy hair, so styling problems didn’t raise alarm bells.

Discovery at the Hairdresser’s

Shortly after this conversation with my daughter, I visited the hairdresser for the first time in about a year.

Her probing fingers and troubled look sparked the conversation that would introduce me to FFA.

She was poking through my hair, and I could see from her face that something wasn’t right.

Naturally, I asked her what was up. She asked what was up with my hair. Had I been under a lot of stress?

In examining my hair with the hairdresser, it was really quite obvious that I had a receding hairline. I was struggling with my hair because I was trying, without knowing, to create a combover with my fringe. Earlier in the year, I had been trying to grow my fringe out, but it was just a nuisance. I didn’t realise that the extra hair had masked the real problem.

I don’t have great hair, but it’s always scrubbed up well. It mostly just does its own thing. I can blow dry it straight, but it doesn’t stay. In my early years, I always had it permed. Any sign of dampness in the air sends it into a horrible frizz.

My visit to the hairdresser that day was motivated by an upcoming trip to Singapore. My hair does not like hot countries at all. I can’t do anything with it. With hindsight, I should have kept it long so that I could have tied it back. The frizz and the hair loss meant I had to scrape it back and keep it plastered to my head for the entire visit.

The Doctors

On my return to the UK in January 2024, I made an appointment with the doctor. Nowadays, a first visit to the doctor means a phone conversation. During that conversation, my description of the hair loss and dry eyes prompted the Doctor to suggest Sjogren’s Disease.

Dr Google had also suggested this to me on occasion. Where it isn’t consistent is that I don’t suffer from joint problems or fatigue. I have in the past, though. I have suffered all kinds of symptoms that have been inconsistent and have been down many routes exploring, Lupus, Salicilate Intolerance, Multiple Sclerosis, Guillain-Barre syndrome, Hashimoto’s and any other auto-immune problems.

At present, I have an exceptionally healthy lifestyle and feel I have cured many of those ailments. We’ll come to that more later.

Sjogren’s Disease

Sjogren’s syndrome is a systemic autoimmune disease characterised by the immune system attacking and damaging its own body tissues. The primary symptoms of this disease are dry eyes and dry mouth, as it often targets the glands that produce tears and saliva, respectively. However, it can also affect other parts of the body, including joints, skin, and internal organs, resulting in a wide range of potential symptoms. Fatigue and joint pain are also common complaints.

An Actual Visit to the Doctors

While I could take the page to moan about the doctor’s surgery system, in this case, it worked well for me. The doctor called me by 9 am on Tuesday and arranged a full set of blood tests for Thursday and a follow-up appointment to discuss the results and examine my hair on the Friday of the following week.

I always think it’s better to get a diagnosis that can be fixed easily than be left wondering whether it’s all in your mind. In this case, there was no answer from the blood tests. All fall within acceptable levels. The only low level worth noting is that folate is on the low side. As soon as I discovered that I was losing my hair, I researched vitamins for healthy hair and started taking Biotin with Zinc Selenium and B12.

The Lifelong Battle with Food

My food story starts far back as a child, and weight has been a lifelong battle for me. My latest round of investigation started in August 2023. I had been reasonably stable through most of my 50s, but several failed attempts at giving up smoking through the COVID years meant that my weight had started to creep up again, and I seemed powerless to control my eating consistently. During the period from 2020 – 2023, my weight had crept up to 12st 4lb. I am most comfortable around 10 stone.

More worrying than the additional weight was the return of my eating disorder. I don’t claim that my eating disorder was entirely cured, but since 1982, I had only had the occasional stress response leading to a binge-purge. As little as once or twice a year. Too much to allow me to relax about it but also not enough to be too concerned or act on it.

As my weight crept up and I began the yoyo dieting again, the eating disorder crept back in. It was not as bad as it used to be, but enough that it was potentially dangerous. It couldn’t continue. That was certain.

Does a Plant-Based Diet Help Frontal Fibrosing Alopecia

I’m skipping 6 months to try and focus on the hair loss problem. At the point where I started looking at a plant-based diet for autoimmune problems, I had already lost the excess weight and got back to fitness. I run 4 miles several times a week and go to the gym. I have a great interest in longevity. It’s not that I want to live a very long life. It’s more that I want to be fit and active for all the years I am alive.

The short story is that over the last year, I have changed who I am and how I think in relation to the appreciation of life, deservability and belief that I may live to be 100 years old. You can start reading the longer story here.

Previous Attempts at a Plant-Based Diet

I have attempted to be Vegan or vegetarian many times in my life. The attempts were mostly diet-motivated rather than ethical. Everyone around me is a meat eater, so I’ve been led back to the carnivorous path. I have not previously found a vegan diet to be healthy for me because of what I suspect is salicylate intolerance. Who can tell? When you suffer from inconsistent symptoms, it’s like trying to score in a moving goalpost.

Nevertheless, I managed to cure many problems by being aware of salicylate intolerance and reduced many of my symptoms by cutting out the main offenders.

Since then, I have come to the conclusion that most of these intolerances are related to gut health and in improving that, I can tolerate more foods without any symptoms at all.

Salicylate Intolerance

Salicylate intolerance, also known as salicylate sensitivity, is a negative response to salicylates, which are chemicals found naturally in many fruits, vegetables, and spices and synthetically in medications like aspirin. Salicylates are also present in certain fragrances, preservatives, and flavourings.

People with salicylate intolerance may experience various symptoms when they consume foods or medications containing these chemicals. Symptoms can range from mild to severe and may include digestive problems, skin rashes, respiratory issues, headaches, and fatigue. In some cases, individuals may even experience anaphylaxis, a potentially life-threatening allergic reaction.

The exact cause of salicylate intolerance is unclear, but it’s thought to occur when the body’s ability to metabolise salicylates is overwhelmed, leading to an accumulation of these substances in the system. The condition is typically diagnosed through an elimination diet under medical supervision, where foods high in salicylates are removed from the diet and then gradually reintroduced to observe any reactions. Treatment usually involves avoiding foods and medications high in salicylates.

Finding Success with a Plant-Based Diet

Despite my previous attempts and challenges with being vegan, I was determined to give it another try in hopes of finding relief for my hair loss and other potential autoimmune issues.

Before I received my results from the blood tests, with the help of Dr Google, I had diagnosed myself with Sjogren’s and set upon the path to finding a natural cure. I already knew that I would not be going down the medical route for a solution. I don’t believe there is a single drug that doesn’t cause more problems than it cures. That’s my belief and is not a recommendation that you should cease any medication that you are on.

I always look to food as medicine first, and it has served me well in the past, including saving me from an unnecessary hysterectomy at the age of 32.

I do know a fair bit about plant-based diets, and I was already eating a plant-rich diet. I had lost 22lbs and was fit. My daughter mentioned the programme “You Are What You Eat: A Twin Experiment” on Netflix and said it was the closest she’d come to being persuaded.

I binge-watched it with interest but failed to be convinced. One thing I am certain of is that whether I eat meat or vegetables, the overriding principle is that my diet is whole foods. I do not eat processed foods.

Whatever diet you choose, the whole food version is better than the one with processed food, junk food, sugar and bad fats.

You are What You Eat: A Twin Experiment – Netflix

“You Are What You Eat: A Twin Experiment” is a documentary series on Netflix that explores the impact of diet on health through a unique scientific experiment. The show features identical twins who change their diets and lifestyles for eight weeks. The experiment is designed to explore how certain foods affect our bodies differently. One twin follows a vegan diet, while the other maintains an omnivorous diet, providing a comparative study of the effects of these dietary choices. Based on an 8-week study, the show aims to examine one of the biggest variables in nutritional science – genetics – by using identical twins as subjects. The series promotes plant-based diet messages and discusses the consumption of meat and dairy within nutritional, economic, and environmental contexts.

Goodbye Autoimmune Disease – Doctor Brooke Goldner

I am an avid YouTube listener. I love those 1-2 hour lectures. I plug myself in and walk for miles. The algorithm is paying attention through our phones and computers, so it started serving me up plant-based diet information, including Goodbye Autoimmune Disease – Doctor Brooke Goldner.

I was eager to listen and, over the next few days, binge-watched everything I could find and set about becoming 100% whole food plant-based.

“Goodbye Autoimmune Disease” is a book authored by Dr. Brooke Goldner, a board-certified medical doctor recognised for her work in reversing autoimmune diseases. The book provides detailed information on how to prevent and reverse chronic illnesses and inflammatory symptoms using supermarket foods. This approach is based on Dr. Goldner’s Hyper-nourishing Nutrition Protocol, which she created after her personal experience with Lupus, an autoimmune disease. The book serves as a sequel to her bestseller “Goodbye Lupus”. In both books, Dr. Goldner shares her insights and strategies to help thousands of people successfully manage autoimmune diseases like Lupus, Rheumatoid Arthritis, Multiple Sclerosis, and Sjogren’s Syndrome. Her work has been featured on TV, radio, and various online platforms.

I joined her Facebook group, too, and there certainly seem to be a lot of people who claim to be cured by following her methods.

Tests Test What They Test and Not What They Don’t Test

I want to point out that almost everything that you hear about diets on the internet is based on testing the one thing that they are trying to promote. For years, I followed the Paleo diet because that seemed also to have proof. While I am following Dr Goldner’s hyper-nourishing protocol, I recognise that she didn’t test what I was doing for the last six months, which was similar to what is reported for the Blue Zones.

Having said that, I was convinced enough to start following her plan. By the time I started, I had discovered that I did not have an autoimmune disease according to the blood tests, so I decided on the Hyper-Nourishing Protocol.

I have been including 1 lb of cruciferous vegetable and the equivalent of half a cup of flax or chia seeds into my diet every day for three weeks. In addition to that, you can eat any other plant-based food you like.

Weeks One to Three on a Plant-Based Diet

So far, so good. I have been enjoying my food and feeling great. Unfortunately, after eight days, I tripped during a circuit class and broke a bone. Such a short time into my plant-based journey, I felt more comfortable with the lifelong indoctrination that you need calcium for bones, so for now, I have reintroduced dairy.

To read more about what I’m eating, visit this page.

Bench Marking my Alopecia Journey

10th February 2024.

This is my hairline today. As you can see, I have large receded areas. What confuses me is that I have regrowth in the further receded parts and in the centre of my hairline, causing a widow’s peak, which I did not have before.

The invisible toll it exacts can often be as impactful as the visual one.

I decided, at the outset, that I would not allow this hair loss to upset me, reduce my confidence or diminish me in any way. I had already started being passionate about the importance of finding happiness through who we are and what we do, not how we look.

I can’t deny that I like to look my best. I always wanted long, luscious hair. My three sisters have it, and so do my daughters, but I don’t, and that’s all there is to it.

Instead, I’ve opted to document this journey, share resources, and connect with others facing similar battles. By openly discussing our experiences and treatments, we fortify ourselves against the emotional strife that often shadows FFA.

Yes, I hope that my change in diet, cures it, creates hair growth or at the very least has arrested it.

If not, I shall explore scarves, wigs or even the possibility of shaving my head and tattooing the solar system on it.

To my fellow FFA warriors, especially women in their golden years coming to terms with this condition, know that you are not navigating this path alone. There is strength in solidarity, hope in shared stories, and power in knowledge dispensation.

We move forward together, hair or no hair, with heads held high.

Understanding Frontal Fibrosing Alopecia

What is Frontal Fibrosing Alopecia?

Frontal fibrosing alopecia is a form of hair loss primarily affecting women post-menopause and is characterised by a recession of the hair in the front of the scalp and sometimes loss of eyebrows.

Causes and Risk Factors

Despite ongoing research, the precise cause of FFA eludes the scientific community, but potential contributing factors include hormonal imbalances or therapies related to menopause, genetic predisposition, and autoimmune responses.


Beyond the obvious hair recession, FFA may be heralded by sensations like itching or tingling and redness or inflammation on the scalp.

Diagnosis and Treatment

Accurate diagnosis often involves a scalp biopsy, with treatment options aimed at slowing the progression via topical steroids, oral medications, and, for some, procedures such as hair transplants. Consult a dermatologist for a tailored approach.

If you or someone you love is experiencing signs of Frontal Fibrosing Alopecia, timely medical consultation is key. Balancing the aesthetic changes with psychological well-being is critical. Reach out, seek support, and stand strong.

For more information on Frontal Fibrosing Alopecia and resources for support, visit ALA’s website to further understand this condition and to connect with a community of those who comprehend the intricacies of living with FFA.

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