wtf is alopecia?

Alopecia is an autoimmune disease.

Breaking it down…

Auto: self.

Immune: to protect against something disagreeable.

Disease: a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.

Autoimmune disease: a disorder occurring when the body mistakenly attacks and destroys healthy tissue.

Alopecia is an autoimmune disease that mistakenly attacks hair follicles, those follicles become inflamed and the result is hair loss.

One in fifty people will have alopecia at some point in their lives. It’s a high statistic and a very visible autoimmune disease. Most often we don’t see it because with hats, hairstyles, scarves and wigs, we are able to hide it.

follicle

Section of a hair from Gray’s Anatomy.

It is believed that a person’s genetic makeup may cause the autoimmune reaction of alopecia, along with other possible triggers such as:

  • Trauma
  • Anxiety/Stress
  • Grief/Loss
  • Pregnancy/Childbirth

In the past six years, I’ve experienced all of the above: trauma from a car accident during my first pregnancy, the birth of our son, the diagnosis of postpartum anxiety following his birth, the passing of two beloved family members during my second pregnancy, and the birth of our daughter. Within the first week following her arrival, I lost more than half of my hair. It continued to fall, but then grew back slowly. I had a full head of hair when she turned four. Four months later, I had a traumatic experience at a work event which triggered my alopecia. The associated post traumatic stress, anxiety, depression and insomnia were intense and over the course of a year, I lost all of my hair.

For our daughter, a severe allergic reaction to dairy at age one was followed with her first bald patch and it grew back within a few months. Her second alopecia flare up came after a freak accident at school just a few months ago that required an ER visit. Shortly after, we discovered four bald patches at the sides and back of her head that are slowly growing in. My dermatologist informed me that some patients have had total hair loss following just one of the events listed above. I’m not feeling sorry for us, but acknowledging that this is a lot for a body to handle in a short period of time, especially with sensitive systems that are susceptible to autoimmunity.

mon

The Princess of Monaco suffered from alopecia totalis following a series of traumatic life events and it all grew back.

bald

Sigourney, Demi, Cate, Natalie, Cynthia, Angelina and Charlize famously shaved their heads for movie roles i.e. money.

hair

The title song from the musical always pops into my head when I think of hair, which makes me wonder: what is hair and why the importance? It is simply modified skin, with keratin being the key structural component. It’s essentially a fibrous protein that we spend hours of time and money to maintain with an endless list of haircare products on the market. Then there’s the barber/salons where we groom, dye, highlight, curl, straighten and style. Our culture is obsessed with haircare. As an alopecian, I constantly question the attachment to hair.

lotus.jpg

I’ve been studying Buddhist teachings and the philosophy of non-attachment. Since all things are impermanent, non-attachment is the only logical attitude one can have towards material things, our bodies, and even life itself. Clinging to the things of this world which are in constant transition is an impossible task. This is the importance of letting go. The impermanence of everything (except change, itself) is a scientific theorem known as the second law of thermodynamics or entropy. Understanding impermanence leads to gratitude for the miracle of the present as well as detachment from the physical.

plato

Personally, I have never felt like my hair was part of my identity and have never been one to express myself through my hair. When I was younger, I always had it chin length for practicality, because it fit better in my swim/water polo cap. In adulthood, it was always pretty long and I always had it in a braid, bun or ponytail. I never dyed it and trips to the salon were always for a basic trim. Pretty boring. So why the complex with losing it? Well, it’s also about losing the feeling of normalcy. If you have alopecia, I know you’ll agree that it’s difficult to hear: ‘It’s just hair’ or ‘at least it’s not cancer.’ These comments are meant to be supportive, but I’ve heard from so many parents of children with alopecia that it adds so much guilt and a feeling of vanity for mourning something superficial. Yes, we are grateful that it is not life-threatening, but it is life-changing.

It is also hard to hear: ‘So-and-so (insert famous actress above) shaved her head for that movie and looked great.’ Again, I know intentions are well and they’re trying to be supportive, but we did not choose this new ‘do and unlike celebrities, we aren’t getting paid for it! My best advice if you or your child are losing their hair to alopecia: cry as much as you need to, you have the right to mourn any loss. However, if you find that you are dwelling too much, remind yourself or your child that hair is just one small piece of your physical being. It does not define you. Just as much as your fingernails, or skin, or size or any other element of the physical body does not define you! Second, creating a practice of Mindfulness will begin to ease the suffering from alopecia. Lastly, be kind and patient with yourself. Take good care. XO

 

 

11 Comments

Filed under Alopecia Files

11 responses to “wtf is alopecia?

  1. JM88

    It’s so hard to share. THANK YOU for sharing!!

  2. That sucks Angie. Hair loss is so much harder for women than men. For us, it’s almost expected. My brother started thinning a few years ago, and being 5 years older than me, I figured if I was ever going to have long hair I’d better do it now. That’s why I look like a homeless person now. I know, I know, feel free to tell me to shut up. But when mine starts falling out, I’m going to sport an epic mohawk for a week, and then shave it all off. Easier said than done for women in our Pantene culture.

  3. Chris, love this! The image of us with blue mohawks comes to mind, 2-headed Spartan! Please dye it blue when/if you get to the mohawk point.

  4. Tara

    Angela, thank you for sharing! Years ago I had to have my head partially shaved due to a serious car accident I was in, and despite my laundry list of injuries, losing my hair involuntarily was probably the toughest part for me mentally. It’s a tough thing for us girls, but in addition to being incredibly courageous you are also a mega babe – with or without hair 🙂

  5. Tara, thank you for sharing! (and thank you for the really sweet compliment). looking forward to more yoga with you!

  6. J

    I am at a loss for words. For the longest time, I felt I was all alone in this love hate relationship with my hair loss. First off A, I thank you for this awesome post. My daughter and I both have alopecia. I agree that stress triggers this disease. It is so sad that even my doctor has no clue what to tell me. I used to feel so alone, however thanks to social media I am finding a great deal of support. I pray for a cure especially for the youth that have this disease. I must admit age seems to lessen the angst that comes with losing one’s hair. You see I have suffered so many losses that my hair is the least of my worries. I can only say, continue to love yourself, encourage others, and enjoy your family! Thanks for sharing and I hope we can continue to motivate one another. I feel we must grieve the loss of our hair, something that I never embraced before because I hid behind my “fake hair”. Kubler Ross stages of grief best explains what we go through. After 30 years, I am finally at acceptance. Be gentle on yourself, time truly heals our alopecia wounds! Sorry to be so long winded. However your post has touched me in a profound way. Take good care!

  7. J

    Reblogged this on jurline and commented:
    A great insight into Alopecia.

  8. Thank you for sharing your story! It is such a tough disease, but I think it helps to share and know that so many others are right there with you. I agree, you should grieve the loss, but not dwell too much because then you begin to lose sight of what really matters. I always think, would I be having the same reaction if I lost all of my nails?! Same to you… be gentle and take good care!

  9. 24 y/o

    Hi.Thanks for your story. It gives me hope and a reminder to think about what really matters in life. I discovered a bald spot about an inch in diameter at the back of my head two months ago and I am really worried that I constantly think about it to the point that I get tired of looking for more answers (I find many depressing ones) about when it will grow back or how it will proceed. I haven’t gone to a dermatologist but I am quite sure it is alopecia areata. Fingers crossed that my hair will soon grow back. Again, thank you. Your blog is a good read and an uplifting one. I find it a great help for me in dealing with this temporary (hopefully) condition.

  10. Kim

    Had my world rocked with alopecia late June 2018 when my colorist saw a bald spot. Since then the spot grew and others have appeared. Doctor gave me a steroid cream, suggested a Rogaine like application, and elimination of inflammatory foods. Have a dermatologist appointment next week. I’ve bought a buttload of hair accessories to hide it and tried to keep on a brave face, which is so difficult. I dance competitive ballroom for my hobby and am not sure if I’ll continue to compete. Hair is part of the whole package with tight artistic buns and more pins stuck in your scalp than you could imagine. What will I do with my hair?! Dancing brings me so much joy and I feel like alopecia has also taken that from me because I don’t want more hair ripped from my scalp or the judges to see my patches. Cried through my last practice session as a matter of fact.

    The emotional toll this crud takes is substantial. Its not “just hair” as some have suggested in attempts to make me feel better. I’ve hysterically cried over it, shed tears every morning getting ready for work, and have emotionally shutdown watching my hair fall out.

    I appreciate this page because it gives me hope. Without it (and other sources), diet wouldn’t have occurred to me to be a cause or possible solution for this. I never heard of this until it was happening to me. Gluten and dairy out, no red meat, haven’t wanted coffee with all the fruits and vegetables I’m pumping in my body. Now taking a prenatal (actually grabbed that at the store with boyfriend in tow – poor guy), biotin, fish oil, vitamin D, and fruit, vegetable, and berry capsules, drinking a little pomegranate juice, and apple cider vinegar w/water every day (learning so much!). Thank God I have friends and family to support me. They may not know how to react or what to say, but they are there to listen. I wanted to thank you to you for sharing this. Not feeling alone in this is helpful and I hope your fight has been successful since posting this.

    • Hi Kim – Apologies for my very delayed response as I haven’t logged on here in ages. You are most definitely not alone in this journey of living with alopecia! Please know that you can still keep dancing with or without hair. I can only imagine the number of pins needed for that ‘perfect’ ‘do. If an option, I’ve found that when I bought a longer wig, I was able to put it up in a bun, ponytail and braid (when I feel most like myself… former self:)
      Sending you love and strength!

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