Meet Jana Bulhmann

Alopecia Areata - hair loss of the autoimmune variety - has been a part of my life for 37 of my 51 years. I was 14 when the first patches started, and was blessed to be a student in a small all girls school on the Canadian prairies as it progressed to more significant loss through my grade twelve year. Alongside 300 other girls I found a small space to be me.

I have never worn a prosthetic - a wig - but for most of my "alopecia career" I covered my head with cotton hats and scarves. In my early 40s I attended a National Alopecia Areata Foundation (NAAF) conference in the US and returned to the discovery that I did not want to put my hat back on after choosing to remove it while in community.

I treated my alopecia for the first year or so - with topical Rogaine - but had minimal regrowth and found the liquid consistency of the drug to be very stressful. My loss is always a slow progression, so when my eyebrows finally started to fall out in my 30s I did see a dermatologist for cortisone shots but as it can, the disease progressed regardless. Now at 51, I am very close to full body loss, or universalis. Ironically the last thing to go seems to be my leg hair!

When I talk about my experience with alopecia I always emphasize two things . . .

One, I am managing a disease in which my immune system prevents my hair follicles from doing their job on a daily basis. I might look healthy but something within my body is not working as it should, as further evidenced by two other autoimmune expressions I have developed over time - Iritis and IBS.

Two, the symptom of autoimmune alopecia is aesthetic, hair loss. The impact of that loss is deeply linked with social experience as well as thoughts and feelings. Like many other experiences in life, losing your hair is a direct challenge to one's self worth. How we respond to that challenge is as unique as we are, as individuals. It is impacted by all of our other life experiences, and we have sovereignty - choice - over how we perceive it. I have always hated the word acceptance in relation to alopecia as it is so static; humans are innately resilient and we make our own rules in that regard. So my choosing to live bare-headed is not a psychological end state, it is simply a personal choice.

Twelve years ago I chose to step more overtly into community, finding my voice as an advocate, board member of the Canadian Alopecia Areata Foundation (CANAAF), and now administrator of an independent group on Facebook, AlopeciaCanada. My life experiences within healthcare - including alopecia - have lead to a more global role as a patient and caregiver advocate, and I now sit on the board of Patient Critical Coop, the National MAID (Medical Assistance in Dying) Curriculum Steering Committee, and volunteer with the Patient Voices Network in BC.


Photo credit: Ryan Walter Wagner

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