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alopecia universalis

My experience of alopecia as a teenager

I asked my son, Harrison, now aged 16 about his thoughts on managing the autoimmune disease alopecia. He was diagnosed in 2016. You can read more about his and my experience over the last few years here. https://practicalhealthcoach.uk/child-develops-alopecia/ There’s never going to be a good time to lose your hair, but having alopecia as a teenager regardless of whether you’re a boy or girl has got to be one of the worst.

What did you think when you first found a bald spot?

When I first noticed I had a bald spot it was pointed out to me by everyone in my year at school. It made me feel very self-conscious and that feeling of constant self-consciousness has stayed with me to this day. I took the short term solution to the problem and simply wore a hat until my hair grew back. But years passed and nothing changed.

What worried you the most about losing hair?

What worried me most was that I would be looked at differently and judged for not having hair. It seemed that I was either seen as a thug or as someone who was sick. At a rugby training camp, some of the boys thought that I was a skinhead and were concerned about being friends with me because of this! I despised the unwelcome attention given to me constantly because of how I looked.

Which was your least favourite treatment protocol that you tried?

My least favourite treatment by far was taking corticosteroid pills. One of the dermatologists prescribed them a couple of years ago. They gave me extreme mood swings… for example, my mood could go from happy and hopeful to angry and back to happy in under ten seconds as I was walking around at school.

After you’d lost all of your hair did you think that it would ever grow back?

Once I lost all my hair, I did not think my hair would ever grow back due to the sheer number of treatments I tried that failed. Eventually I gave up on my hope of getting my hair back, and thought that I’d be wearing hats all of the time.

What does it feel like now that your hair is regrowing?

Now my hair is finally growing back I feel much more hopeful for the future. But I still feel self-conscious because I still have some bald spots. I know that they’ll fill in eventually, but it’s taking time.

What to do if your child develops alopecia

First off, while it would be fantastic to receive a diagnosis at the very first hint of a bald spot, the chances are that it will take a period of time to receive a diagnosis after your child develops alopecia. Then you know what you’re dealing with, and can take appropriate action immediately. I’m speaking as someone who didn’t do this, and hindsight is a wonderful gift! It would have been much more straightforward, painless and quicker to address the autoimmune disease before it really dug in, took hold and became even more challenging to address.

What not to do…

We didn’t do this… My son, Harrison’s, alopecia didn’t start with an obvious spot. It began slowly during the Summer of 2016 with thinning eyebrows and the ophiasis pattern. The first time that we noticed it, we thought that it was just a bad haircut! His hair behind each ear had simply disappeared in even lines almost as if it had been waxed. It wasn’t until the next hair cut a few weeks later, with a different barber who announced that it looked like alopecia.

With the second hairdresser’s diagnosis we visited the GP who thought that maybe it could be alopecia, but he wasn’t sure. It was tempting to go back to the barber and ask for his recommendations given that the GP had none, other than there’s not much that you can do and it’ll probably grow back on its own. To be fair to the doctor maybe this would have happened, but unfortunately two other events happened in relatively quick succession which resulted in complete hair loss.

Immune System took a hammering

First, in December Harrison suffered a nasty spiral fracture to his leg while playing rugby. This meant that a super sporty boy was in a cast and stuck on the sofa for the best part of 12 weeks. He was annoyed at missing such a big chunk of the season, and unable to do any exercise at all. Being stuck inside and on the sofa had a negative impact on him. He then developed a throat infection. A week after starting a course of antibiotics his hair was falling out in handfuls. This was in March 2017.

Back at the GPs when I mentioned the timing they were genuinely confused and told me that hair loss wasn’t caused by antibiotics. It simply wasn’t a side effect of amoxicillin. At this time I had an awareness about gut health and knew that antibiotics could wipe out your ‘good’ bugs. I was wondering how I knew this but the doctor didn’t. Typically if your child develops alopecia you will be referred to a dermatologist, in our case he recommended a topical steroid cream. That didn’t work. Harrison lost all of his hair including eyebrows and lashes.

How many experts?

We then started along a path of seeing various experts including: a pediatric dermatologist, allergist, pediatric gastroenterologist (x2) and immunologist. Each of these doctors carried out their own tests, and some prescribed treatments too which we dutifully carried out. These appointments were mainly through our private health insurance, but none of them helped much either. Although the second dermatologist told us that the first had prescribed the wrong version of the steroid cream. Awesome.

This all took months during which time Harrison would have some patchy growth and brows and lashes would come and go. For the most part he was wearing a hat to school, and his friends and teachers knew of his condition. When he turned 14 he joined our local gym and started working out. He trained himself using youtube videos and after a year or so he bought Arnold Schwarzenegger’s Body Building bible.

While he did have some patchy regrowth during this time it never stayed, as I mentioned before the brows and lashes were particularly unpredictable. We’d also completely given up on conventional medicine as none of these experts had helped at all. What continues to astonish me is that the gastros didn’t have a clue about gut health. The problem with all of these specialists is that they are so focused on their own little niche, which they’ve spent years being immersed in, that they no longer see the body as a whole interdependent system.

Done with ‘normal’ medicine

Having given up on mainstream or ‘normal’ medicine while continuing to have an unhappy bald son we crossed over the line to alternative treatments… We saw a trichologist, Chinese Medicine doctor, bought hair growth products from Israel(!) and tried acupuncture. Do I have to mention the shampoos? Yes we tried ‘hair growth’ shampoos too. All the above served to do was lighten my purse. With the exception of the acupuncture which I’ll come to later, none of the above helped at all. Still bald, still not happy.

In the Summer of 2018 we experienced hope for the first time in two years. Harrison had an appointment with a Functional Medicine doctor who was the first person to utter these magic words: Root Cause. Rather than treating the symptoms of alopecia i.e. hair loss, we would get to the bottom of what was actually causing the hair loss. He started on the Auto Immune Protocol diet which produced limited success, in that his eyebrows which had grown back did not fall out. He was treated for an infection and placed on a supplement regime which he took for 2 to 3 months depending on the supplement.

Child Develops Alopecia
Back to school 2018

Back to school

He went back to school in September with a smile on his face. It didn’t last long, by November his eyebrows had gone again. I didn’t want to be the kind of Mother who was constantly hassling her child so we didn’t try anything else. In fact, I thought that he had come to terms with it, and if he was happy, then I was happy. But sadly that wasn’t the case. In February 2019 he asked if he could get a wig. Clearly he hadn’t come to terms with being a bald teenager, and was starting to grab at straws.

I didn’t have a clue about how one went about getting a wig, none of the doctors had mentioned it as an option. Plus because he played so much rugby I kept seeing this image of him being on the pitch in a scrum, and instead of the ball coming out, it would be a wig… So we went back to the drawing board.

LDN

I remembered an autoimmune web conference that I’d attended where a US pediatrician mentioned using LDN with children suffering from autoimmune disease. In a nutshell, for those of us who like our science to be understandable… it causes increased endorphin release, and increased endorphins modulate the immune response. His Functional Medicine doctor had experienced success with this strategy for other patients with alopecia. He started in February, and by May new hair growth had started. This is something that you could perhaps consider if your child develops alopecia. I’ve written about it here https://practicalhealthcoach.uk/alopecia-and-ldn/

Functional Medicine Health Coach

Also in May I took a  5 week course with a Functional Medicine Health Coach on alopecia. This was the first time that I heard that it was possible to regrow hair even if you’ve been bald for years! By June I was hooked and enrolled on the ADAPT Functional Medicine Health Coach program in order to help spread both the concept of Functional Medicine and Health Coaching in the UK. It has literally been the only thing that has worked for my son, and as you can tell we’ve tried a pretty big array of treatments over the years.

Fast forward to today and Harrison’s hair is continuing to grow in. Perhaps more importantly he hasn’t lost it either. I mentioned earlier about acupuncture, we tried that for a few weeks in the Summer of 2019 when his hair had already started to grow back, potentially that may have helped too.

My Health Coaching Practice

In my practice I work with clients (or their parents) to help them find their own root cause for alopecia. I can guarantee that your root cause will be different to other clients. There’s no magic lotion, potion or pill. Just because LDN helped Harrison it may not help you. If your child develops alopecia you need to start with gut health and diet, moving on to the importance of sleep and exercise, finally looking at breathing/meditation and environmental causes. I know, it all sounds so simple and straightforward!

What’s unique about my work is the focus on micro behaviour changes through the lens of autoimmune disease. I’ve spent the last four years learning about what works, and what doesn’t, for alopecia. I’m actually really excited to be able to share this with you in the hope that you save time and money yourselves. I will always work with people who can’t afford my fees on a pro-bono basis. Please get in touch if you’d like to go on my pro-bono waiting list. Obviously, like you, I can’t afford to work for free so each quarter I work with one client for 3 months on this basis.

Thanks for reading, I wanted to raise awareness that if your child develops alopecia it’s entirely possible for hair to regrow. I want to give you both insight and hope.

Can Rosemary Essential Oil help Alopecia?

Upon finding a bald spot in your hair, your first thought probably isn’t to reach for Rosemary Essential Oil… Typically in the UK if you visit your GP with a suspected case of alopecia, you’ll likely be referred to a dermatologist. If you’re lucky enough to receive a referral you will likely be prescribed with Minoxidil.

One of the standard treatments is Minoxidil (this is the active ingredient in over the counter Rogaine). This strategy is treating the end result of alopecia versus finding and treating the root cause. The tricky part of managing alopecia is that everyone will have a different trigger for the cause of their alopecia. It takes time and effort to unpick and get to the bottom of your root cause. It’s much easier to prescribe Minoxidil.

This means that when you stop using Minoxidil there is every possibility that your hair will start to shed again. When my son first received a diagnosis and tried it, it had no effect whatsoever. Although he started with the ophiasis pattern once the patchy circular areata pattern started he lost all of his hair incredibly quickly.

While he’s currently having amazing regrowth there’s a couple of stubborn patches which are requiring some additional encouragement. On these two areas we’re using rosemary essential oil in a carrier of black seed oil. Before you think that I’ve completely lost my marbles, gone all Woo Woo, and are scoffing at ‘essential oil’ as a means for hair growth, let me point you towards the science.

Historically rosemary essential oil has been used as a folk medicine treatment. In a 2015 study participants with androgenic alopecia were treated with either rosemary oil or Minoxidil 2.0%. Interestingly after 6 months the oil produced equal results with regards to Minoxidil with regards to the number of hairs that grew. Even better the oil didn’t have Minoxidil’s side effects.

We’ve just started this regime, and expect that it will take time to show results. I wanted to flag this alternative treatment as most people will be struggling to obtain a doctor’s appointment and/or prescription at this time. It’s also a more cost effective solution with fewer side effects (like irritated itchy scalp). Note: Only use rosemary oil in a carrier oil like grapeseed or jojoba. Do not use neat on skin.

Source: http://europepmc.org/article/med/25842469

Treating Alopecia with LDN

Over a year ago my son who’d lost all of his hair due to alopecia came to me and asked if he could get a wig. This knocked my sideways as I thought that he was dealing with his hair loss well. More to the point, I didn’t want to be the type of Mother that was constantly on at her child giving him the impression that he needed to be ‘fixed’. If he was happy, then I was happy. The converse was also true. I recalled some research that I’d done the year before with regards to treating alopecia with LDN. I’d not done anything with this info at the time, just stored it away.

I didn’t think that the answer for a super-sporty boy would be a wig. I revisited my alopecia studies, and recalled an auto-immune seminar that I’d attended with US pediatrician Dr Elisa Song https://healthykidshappykids.com/ She’d mentioned that some of her patients who had been diagnosed with auto-immune diseases had responded positively to the medication LDN. This medication was side effect free which was important to both my son and me. (We’d previously discussed Jak inhibitors with a dermatologist and not felt confident that the benefits outweighed the risks).

After finding out more via the LDN Research Trust https://www.ldnresearchtrust.org/ I was intrigued to find some examples of people with alopecia who’d experienced regrowth. Given the tricky nature of this auto-immune disease we’d already tried many different ‘experiments’, and saw this as another avenue to pursue. After discussing further with his functional medical doctor, we decided try treating his alopecia with LDN.

Three months later his completely smooth head developed some under the skin lumps and bumps, these developed into fine white growth which ultimately grew back in as his thick dark hair. It’s still growing back now.

This medication has been a critical part of the alopecia puzzle along with many significant lifestyle changes which would be challenging to anyone let alone a teenager. His strength of resolve and character inspires me every day.

The purpose of this article is to let you know that other options exist that may support your hair regrowth. You could discuss LDN with your functional medicine practitioner. Alternatively you can get in touch with the compounding pharmacy that supplies LDN and can arrange delivery directly to your home as a private patient. This treatment is not available on the NHS. If you’re keen to pursue this option, here’s the link to the pharmacy https://dicksonchemist.co.uk/new/.

Alopecia is a disease which can affect anyone. My experience of living with someone impacted by this particular auto-immune disease is what made me decide to retrain as a Health Coach. Conventional medicine had no answers for us, even worse it had no hope. From the outset functional medicine gave us a measure of confidence, and the opportunity to try different protocols which have ultimately been successful.

Please leave a comment if you’ve had experience, positive or negative, of trying LDN.