Alopecia is an autoimmune disease.
Breaking it down…
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.
Section of a hair from Gray’s Anatomy.
It is believed that a person’s genetic makeup may trigger the autoimmune reaction of alopecia, along with other possible triggers such as:
- Family Loss
In the last two years I’ve experienced all of the above. Trauma from a car accident during my first pregnancy, the birth of my son, the diagnosis of postpartum anxiety and postpartum stress disorder following his birth, the passing of two beloved uncles during my second pregnancy and the birth of my daughter. I’ve read stories about people that have had total hair loss following just one of the events listed above. I’m not feeling sorry for myself, but acknowledging that this is a lot for a body to handle in a short period of time, especially with a sensitive system susceptible to autoimmunity. My hair loss has been on and off during the course of these events. Each time they’ve been in small patches and have started to grow back within months and without treatment. However, during the third trimester of my second pregnancy, just shortly following the sudden loss of my dearly loved uncle, my hair started to fall out in larger clumps. A friend that works for Newsweek asked me to share my story. The article below explains the first part of my experience with alopecia.
About a month after this was published, my daughter was born. I felt the same overwhelming state of euphoria that I experienced only 18 months before as she arrived exactly on her brother’s half birthday! With my awareness of the postpartum complications that can occur, I’ve been taking the time to practice yoga and meditation daily and have been feeling great. However, this time around the shock of labor and sudden drop in hormones have increased my hair loss to a level that I’ve never experienced. Within the first month of my daughter’s arrival, I lost more than half of my hair. I would say this is a traumatic event in itself.
Postpartum Alopecia is a temporary form of hair loss that many women experience after giving birth. During pregnancy, estrogen and progesterone levels increase causing the hair to stay in the growth cycle longer, which is why a pregnant woman’s hair tends to be at it’s best and grows tremendously during this time. After giving birth, the hormone levels immediately drop. This triggers the shedding cycle and therefore the hair that should have shed over the past nine months is quickly lost. It’s common for the hair in the temple/hair-line area to be affected. Typically, it takes three to six months for this period to stabilize. Unfortunately, there isn’t anything you can do to prevent this from occurring and the severity varies from woman to woman. Alopecia and the normal postpartum hair loss is a tough combination.
The Princess of Monaco suffered from alopecia totalis following a series of traumatic life events and it all grew back.
Sigourney, Demi, Cate, Natalie, Cynthia, Angelina and Charlize famously shaved their heads for movie roles i.e. money.
The title song from the musical keeps popping into my head these days, which made me wonder: what is hair and why the importance? Hair is simply modified skin, with keratin being the key structural component. It’s essentially a fibrous protein that we spend hours of time and many dollars 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. Since I’m losing it, I keep asking myself how much I’m attached to it?
Attachment is the origin, the root of suffering; hence it is the cause of suffering. -Dalai Lama.
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 small details. Acceptance of the way things are in the present moment is the Buddhist way to being centered and content.
I’ve 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. Since college it’s always been pretty long, but mostly because I didn’t know what else to do with it. I was looking through our Flickr account and in the past few years almost every photo my hair is either in a braid, bun or ponytail. I’ve never dyed it and trips to the salon have always been for a basic trim. Pretty boring. So why the complex with losing it?! Well, it’s also about losing the feeling of normalcy.
When you have alopecia, people tell you that it’s caused by stress…and then they tell you not to stress about it. Good one. How can you not be at least slightly worried about your health when handfuls of hair are falling out each day?! Well, I find that it is a daily struggle as I lose more and have no idea when it will stop. I know you’ll agree that it’s difficult to hear: ‘It’s just hair.’ I know people mean well and are trying to be supportive, but personally I then feel guilty, like I’m being vain for mourning something superficial. It’s 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: Cry as much as you need to, a person has the right to mourn any loss. However, if you are dwelling too much, try really hard to remind yourself 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!
There is no cure for alopecia, only treatments and the success varies for each case. Along with the clinical treatments of corticosteroid injections, (yes, shots in the head), and topical creams/ointments, there are alternatives that may aid in hair growth. Here is a list of what I’ve researched:
- Vitamins and Minerals: folic acid, biotin, vitamin A, vitamin B6, vitamin B12, vitamin C, vitamin D, vitamin E, iron, copper, zinc
- Plant extracts: tea tree oil, he shou wu, nettle extract, saw palmetto, gotu kola
- Essential Oils: Rosemary, Lavender, Cedarwood, Sandalwood – mixed in a base of either vitamin E, jojoba, or olive oil
- Apple Cider Vinegar
- Coconut oil
- Onion Juice
I saw my dermatologist last week and both she and a friend of mine suggested some dietary changes to possibly help remedy the problem: elimination of dairy and gluten and other inflammation causing foods. Where there is hair loss, the follicles are inflamed, so an anti-inflammatory diet can’t hurt.
A helpful list of anti-inflammatory foods…
…and the top ten inflammatory foods to avoid like the plague:
Honestly, I felt annoyed after reading these lists. I don’t want to be that person with the strict diet constrictions. Plus, I had just gone 9-ish months without some of my favorite foods and now I’m supposed to eliminate even more?! I really love cheese with my wine, especially those unpasteurized soft cheeses that you’re not supposed to consume while pregnant. I think I had a chocolate milkshake every night during my last trimester. I love dark beer. I love pasta. I love our weekly In-N-Out Double-Double Animal Style cheeseburgers. Fortunately, my favorite meal, sushi, is gluten free. I love rice, but no soy sauce…it contains wheat.
I recently read a post with a sarcastic ending of: “…oh, lucky me and my first world problems.” I’d never heard this phrase before, but suddenly started coming across it more. Even having the OPTION to eliminate certain foods is definitely a ‘first world problem’ and I feel badly that I ever thought I was going to lose something by giving up processed foods. I’ve been thinking about both sets of my grandparents who lived off of rice and fish or whatever they caught or grew…or fermented. My very Croatian Catholic grandma tells a story about how she had to lie when she was in elementary school about how much milk she drank at home. She only drank the wine my great-grandparents made because they couldn’t afford milk. So I am embracing this change to eat simply and am going to drink plenty of wine and no milk.
I’ve felt stress in the past: college, grad school, work, not so wise life decisions, etc., but this is stress on a cellular level. The car accident, subsequent anxiety/ptsd, family loss and pregnancies/labors have triggered alopecia as I’ve never experienced before; I plan to try the topical treatment options, but I hope to get to the root of the problem and heal on a much deeper level. My Alopecia Project is my way of documenting this journey of loss and growth. This is a condition that I live with and I am committed to moving forward – healing from the inside out and bringing my body back to a balanced state. I have been doing my best to stay positive. I focus on caring for my beautiful babies; my son isn’t talking, but everyday he makes me laugh out loud. Even my little girl, only one month old, makes me laugh with her facial expressions…typically while passing gas. I have an amazing fiance that also makes me laugh and I feel so much love and support from him, my family and friends. I have shed many tears, but I’m over feeling sad and fearful of losing all my hair. I have two kids under two and don’t want to look back at this precious period in time and have any regret.
I am stating the obvious: alopecia sucks. BUT it’s a disease that is not life threatening and I am beyond grateful for that. If you are following this, I hope you find support, inspiration and this helps soothe your soul knowing that you are not alone in this crazy world of living with alopecia. I would love to hear your story, treatment suggestions, how you’ve coped or whatever you feel comfortable sharing here. XO
A post in an alopecia forum suggests that it can be therapeutic to share before, during and after photos. A little scary to share, but here they are.
P.S. Our dog seems to be having some sympathy hair loss, (actually just allergies according to our vet), but I like to think he’s shedding intentionally for moral support. (Wo)man’s best friend.