Tag Archives: Alopecia support

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

 

 

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