Amalie’s Hair Loss Journey with Lichen Planopilaris

If you saw me on the street without my hair topper, you most likely wouldn’t think that I suffer from hair loss; you would probably just think that I have fine hair, like many other Scandinavian girls – and that’s completely okay. What people sometimes forget is that hair loss comes in many different forms: large and/or small, universal and/or in patches, permanent or temporary, and scarring or non-scarring.

For me, my hair loss journey began in April 2021, when I went to the doctor for the first time because I could feel that my hair was getting thinner and thinner. It had been going on for a long time, but I didn’t want to accept it. After several visits to my doctor, where the diagnosis changed each time from dandruff to fungal infection to psoriasis, I finally had enough and insisted on being referred to a dermatologist. This was in August 2021.

Amalie's hair loss with LICHEN PLANOPILARIS

I Received My Diagnosis

After finally getting a referral and an appointment, I visited the dermatologist on November 2, 2021. After just one visit and a biopsy, I was diagnosed with Lichen Planopilaris (LPP). LPP is an autoimmune disease that appears as white patches on the scalp, surrounded by small sores and significant redness. This causes the hair to be easily pulled out, which can easily happen since itching, pain, tenderness, and a burning sensation on the scalp are typical symptoms of the condition. I have experienced them all.

As a result of Lichen Planopilaris, the hair does not grow back, which leads to what is known as cicatricial alopecia (scarring and permanent hair loss). Lichen Planopilaris is a relatively rare autoimmune disease, but nevertheless it is one of the most common forms of scarring hair loss. The condition most often affects young women, but it still spans widely across age and gender.

The Pain Affected Me Severely

The itching and burning sensation on my scalp have been unbearable symptoms to live with. With the burning sensation, it is difficult to wear my hair up, but just as difficult to wear it down. Sometimes the sensation became so intense that I couldn’t get out of bed because of the pain. It also didn’t help my mental health that my hair kept falling out.

Since receiving my diagnosis, I have been treated with malaria medication (hydroxychloroquine) and later the immunosuppressive medication (methotrexate). Both are quite strong forms of medication with intense side effects. To monitor my body’s response, I have blood tests every month. In addition, I see my dermatologist every three months to reassess the amount of medication and to evaluate the condition of my scalp. At the moment, I am taking methotrexate while also using a liquid corticosteroid (Betnovate) every other day. These treatments have helped eliminate the burning sensation on my scalp, and the inflammation has clearly decreased. This also means that my hair loss is significantly less than when I was first diagnosed, and today I no longer lose entire clumps of hair when I run my fingers through it.
Nevertheless, the disease has caused significant hair loss. I have lost two-thirds of my own hair. Fortunately, I had very thick hair before I started losing it, so I still have a good amount of my natural hair left.

My First Wig Prescription

I experienced major hair loss at the back of my head, and in December 2021 I reached the point where I could no longer cover it with my own hair. I therefore decided to apply for a subsidy for a wig. I received my first prescription approval for a wig one month later, and already in February 2022 I had an appointment at Toftild to explore my options.

With and without Hair Topper

Without Hair Topper

With Hair Topper

Why I chose Toftild

I chose Toftild because, in my many searches for hair loss solutions, they were the company that kept appearing. Several of the people I had started following on Instagram had also received help from Toftild. In addition, I live in Aalborg Municipality, where they have a fixed agreement with Toftild as a supplier of alternative hair solutions. All in all, the choice was very easy to make – and I don’t regret it for a second!

What is a Hair Topper?

My first visit to Toftild was a consultation with Anne, where we discussed which solution would be best for me. My hair loss is not significant enough to require a wig. Instead, I was introduced to this amazing invention: the hair topper. A hair topper is smaller than a wig, but it is fantastic for women who still have their own hair – or some of it. The topper integrates with your own hair to add volume and cover any sparse or bare areas on the scalp. It can even be taken on and off whenever it suits you, as it is attached with clips.

The first topper I had only covered the back part of my scalp, and I am very happy that my first topper was not larger. However, when it was time to replace it, I felt ready to try one with more coverage. I am now on my third hair topper, and once again I chose to try something new – this time it was the color; from blonde to brunette. I made this decision because my scalp is finally calm enough for me to color my hair without triggering an inflammatory flare-up.

The topper has clearly been the best solution for me, and I enjoy wearing it every single time – which is almost every day! I also appreciate that I can simply visit Toftild if I experience any issues – for example, if a thread on one of the clips is coming loose – or when I need a new hair topper.

Are you also experiencing hair loss?

Are you experiencing hair loss and would you like to learn more about the options we offer to give you more hair? You can book a free, no-obligation online consultation with Lise, who will assess your hair loss and provide our professional recommendation for possible solutions. All you need to do is fill out the form below. It will greatly support the assessment if you attach a few photos of your hair loss, but this is not a requirement. The photos will be deleted after the evaluation has been completed. PLEASE NOTE: Response time is up to 7 business days.