Three years ago, Tim Rees, a clinician from Germany, lost all his hair a second time to alopecia universalis (AU). As a registered clinical nutritionist he felt he had lost his credibility to help others with autoimmune conditions, and when he expressed those feelings in a recent blog (link below), it struck a chord with me.

: Tim Rees with his son in 2022

“All my hair fell out, but it was my response to it that destroyed me. You could be forgiven for thinking this is all centered around vanity, but the thing that crushed me was that it made me feel like a fraud.” ~Tim Rees, registered clinical nutritionist

As a clinician, I felt similarly when I lost half my hair in September of 2022. I wondered if others would consider me a “failure” for not having been able to prevent it.

Neither Tim nor I are physicians and thus are not qualified to diagnose conditions (in ourselves or in others). Our role is to provide nutrition education or medical nutrition therapy for conditions diagnosed by physicians.

I was so struck by Tim’s recent post sharing about his complete hair loss and how he felt about it as a clinician, that I asked his permission to share his story. Below is an excerpt of his recent post. My goal in sharing this is so that people can understand what alopecia universalis is, and how it feels as a clinician to be diagnosed with an auto-immune disorder. It is my hope that sharing Tim’s post will enable people to better understand that clinicians with health conditions (whether autoimmune or not) are no less able to support their clients. What makes a clinician knowledgeable is their training and ongoing study in their area of clinical practice and I do not believe that a clinician diagnosed with an autoimmune disorder or metabolic disease is disqualified from being able to help others. On the contrary, provided they remain objective, I think a clinicians’ ability to understand their clients’ clinical struggles from “both sides of the clinical desk” while offering evidence-based support may be an asset.

I will begin with a very brief explanation of the disorder itself, so Tim’s words make sense.

Alopecia Universalis

Alopecia universalis (AU) is an advanced form of alopecia areata (AA) which is a condition that causes round patches of hair loss. This recent article describes alopecia areata and shows pictures of what it looks like.

In alopecia universalis, there is a complete loss of hair on the scalp and all over the body and it is thought to be an autoimmune condition in which the person’s immune system mistakenly attacks the hair follicles [1].

This Year I Stopped Hiding – a clinician story

Name: BetterByDesign Nutrition Ltd.
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(written by registered clinical nutritionist, Tim Rees)

“Three years ago my hair started falling out for the second time. In fact, I’d only had it all back for about 6 months before I got gut-punched standing before the mirror. “It’s not as bad as last time,” I said to myself.

But like an unstoppable rebel force (name the movie) my immune system killed my hair follicles and the hair dropped away like oak leaves in autumn, minus the orange. Alopecia Universalis, not a single hair remained on or in (I’m told) my body.

At the same time, the entire world went into lockdown and the corporate presenting side of my business died along with my self-esteem, my confidence and my monthly hairdressing appointment. There had never been a better time to hide.

You could be forgiven for thinking this is all centered around vanity, but the thing that crushed me was that it made me feel like a fraud. I was so embarrassed the thought of people discovering my secret presented as physical pain. Alopecia, one of the most visible autoimmune diseases one can have, undermined my work and, I thought, my credibility as a nutritionist helping people with autoimmune conditions.

But that’s not true. I’ve done amazing things with nutrition for myself and my clients. Until fairly recently I had lost my hearing to the point that I could no longer use the phone and was conducting sessions using Skype subtitles and talking non-stop in the hope I’d cover their questions before they thought them up. I have a whole list of reasons-why-I’m-not-a-fraud but I won’t bore you with them, after all, most of these insecurities are in my head.

But, here’s the thing. I think I can reverse this condition. Two years ago I stuck to my exclusion diet for four months by which time I had quite a lot of regrowth. Fluffy like a baby owl but still, living follicles. In fact, I remarked to my helpless doctor that I wasn’t worried about the hair, that it was coming back and all was fine. Ever the optimist. But after some bad luck, I began compromising a little here, and a little there, it was Christmas after all, and before I knew it I was doing a passable impression of a bowling ball again.

This year will be different. I’m plastering this all over social media for a number of reasons. Firstly, it’s a part of my acceptance. I fought hard against acceptance mistaking it for defeat. The truth is, you must accept how things are today in order to make a difference tomorrow.

Secondly, after posting a couple of photos on Twitter, I already feel better. And, thirdly it’ll help to keep me motivated and compliant for however long it takes to allow my body to heal.

I’ve been drifting and failing as a husband, as a new father and as a man. Not because I have alopecia but because I’ve let it destroy me. There’s a stoic lesson in there.”

[Shared with permission from Tim Rees’ blog.]

As Tim outlines in the full article, it is his goal this year to reverse his alopecia universalis, and like I did when I set out to recover my own hair loss from telogen effluvium and androgenic alopecia, he will be sharing his progress on social media for all the world to see.

Tim plans to use an exclusion diet as well as nutritional supplements and to document why he is using them. He also intends to integrate other approaches which he hopes will support his goal, including the use of sauna, cold thermogenesis, exercise, circadian rhythm / light exposure, etc. and document what he found helpful. While this will be Tim’s personal account of what he is doing to improve his hair loss, I am confident that as a clinician, he will document his choice of approaches and provide references.

I applaud Tim’s boldness and bravery to stop “hiding” and to live his hair loss story and goal of hair loss restoration in a public way. I wish him all the very best in achieving his goal.

Final Thoughts…

It is important to keep in mind that what may work for Tim may not work for others diagnosed with the alopecia universalis, anymore than the nutrients I took would work for others diagnosed with telogen effluvium and androgenic alopecia. I chose to not write about which nutrients I took and in what dosages because it was not relevant to anyone other than me. I did write two referenced articles related to nutrient supplementation and hair loss and the first one was Hair Loss in Hypothyroidism (Part 2) – Nutrients of Importance and the second was Nutritional Supplements With Evidence to Restore Hair Loss.

Since taking some nutritional supplements is not without risk, I would encourage anyone considering doing this to first consult with a qualified healthcare professional. Let them assess you to help determine which nutrients may be low or deficient based on dietary intake, and lab work.

A registered clinical nutritionist such as Tim Rees, BSc mBANT rCNHC from Ebersberg, Germany is licensed to support people in that country and I can support people in several provinces in Canada. If you would like more information on how I can help, please send me a note through the Contact Me form at the top of this page and you can reach out to Tim on his blog.

[Please note that I do not know Tim personally and as such this article is not an endorsement.]

To your good health!

Joy

You can follow me on:

Twitter: https://twitter.com/JoyKiddie
Facebook: https://www.facebook.com/BetterByDesignNutrition/

References

National Institute of Health, Genetic and Rare Diseases Information Centre, Alopecia universalis, https://rarediseases.info.nih.gov/diseases/614/alopecia-universalis

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