Living With Alopecia: A First-Person Account

For centuries, long, lush locks have been seen as a symbol of great beauty. We frequently perm, curl, and weave in strands to help enhance our appearance, oftentimes without much thought about what life would be like without a perfectly coiffed crown. Now imagine the shock and surprise of suddenly losing it all.

37-year-old Sonya Weekes found herself holding back tears as her dermatologist explained that her thinning hair was a condition called alopecia, and that it would likely never grow back. Six years later, she's educated herself and others on her emotionally and physically distressing condition and has gained a different outlook on what beauty really means.

As told to Nykia Spradley

About 6 years ago, I was experiencing hair loss and slow growth in the center of my scalp. That area has always been weak, but I kept perming my hair. Then, about 7 years ago, the thinning got really bad. I read an article that said you should visit a dermatologist if you are experiencing hair loss, but it had never occurred to me before that I should visit a doctor.

When I found out why I was losing my hair, I thought I was going to cry in the doctor's office, but I didn't. However, I was very depressed. Women look to their hair for beauty, and I didn't feel attractive. I thought I wouldn't find a husband with short hair, but then I decided that I didn't want someone who can't see past my hair and not see my heart.

I wasn't at all familiar with alopecia, so I looked online for more information about my condition. I also started seeing a doctor that was conducting research on my specific disease. The most surprising thing that I learned about alopecia is that there is no cure, and doctors aren't sure what causes it. There are guesses that braids, over-processing from relaxers and weaves contribute to it. I have stopped perming my hair, but my scalp in some areas is permanently damaged, so now I wear my hair in a short Caesar cut.

There are many African American women that suffer from alopecia. Hair thinning and hair loss affects as many as two-thirds of African-American women by age 50, according to R. Martin Earles, M.D., a Chicago-based dermatologist who specializes in hair-loss treatment.

The effects vary, some worse than others. The earlier you diagnose it, the better, because you can take measures to maintain the portions of the scalp that are still healthy. It's key to catch it before the scalp is permanently scarred.

After my diagnosis, I tried several treatments to stop my hair from falling out, like extra-strength Rogaine and steroids shots. The Rogaine dried my scalp and I experienced itching and flaking, so I discontinued using it. The steroid shot helped stop the spreading, but didn't heal the affected area where hair was already completely gone.

The treatments available for alopecia depend on when you get them. Early treatment is best; however, right now my only option is surgery to replace the scarred scalp with healthy scalp, and unfortunately this treatment isn't covered by my insurance company.

I've adjusted to my hair loss by wearing it short. I am grateful that I can rock it well. But even though I do get many complements on it, I still miss my hair. I've connected with other African American women who also have alopecia. It's good to talk to someone who understands.

It is important for cosmologists to be educated in alopecia - know the signs, what it looks like, and suggest that clients who are experiencing hair loss go see a dermatologist. When my hair started thinning, my hairdresser suggested different products, hairstyles, and ways to take care of my hair, but I really needed to see a medical doctor. Many African American women don't think to see a doctor and the condition gets worse. Unfortunately the answers aren't found at our hairdressers.

BREAKING DOWN ALOPECIA

There are several types of alopecia, a few of which are preventable and can be treated if detected early:

Alopecia areata is a variation of the disease that affects the scalp from the inside. The immune system, which is supposed to protect the body from viruses and bacteria, mistakenly attacks the hair follicles. Hair loss occurs in small round patches and typically doesn't spread beyond that.

Traction alopecia is the most common form of this condition amongst African American women. When hair is consistently pulled too tight into ponytails or braids, stress is put on the strands and they fall out. If caught early enough, a topical minoidil treatment like Rogaine can help restore hair. However, repeated pulling at the scalp can cause scarring and root damage that will prevent your hair from growing back. The best bet for preventing this type of hair loss is to remove braids and weaves, and avoid relaxers if possible.

Cicatricial alopecia – this skin condition cases inflammation in the scalp that destroys the hair follicles and replaces them with scar tissue. The residual damage from the scarring is permanent.

Androgenic alopecia – this occurs when the normal hair growth phase shortens, making strands more fragile and prone to breakage. Over time, hairs falls out easily, leaving bald patches and thin areas.