Clear, Caring Answers About Alopecia.
Written by Kaelie Piscitello
Happy Alopecia Awareness Month from Postcard Getaway! Alopecia is an autoimmune disease where a person’s immune system attacks hair follicles and causes the person’s hair to fall out. It affects 160 million people worldwide, including me.
Alopecia usually begins with small and large circular bald spots on the head. However, these spots can also appear on other parts of the body. Some people lose all of the hair on their head, while others experience bald spots. Those with alopecia often have small pits in their fingernails, and it can serve as a comorbid condition alongside other autoimmune conditions.
Alopecia is unpredictable, making it stressful for patients. Many people with alopecia often feel misunderstood, so I have compiled a list of the most common questions people ask me about my disease, along with honest and factual answers here. All of my information has come from doctors, the National Alopecia Foundation website, and my lived experience.
My dad and uncles have lost their hair. Do they have alopecia, and will I get it?
Well….maybe. Scientists attribute 95% of hair loss in men to androgenetic alopecia, or male pattern baldness caused by age and genetics. However, unlike alopecia areata and alopecia universalis, androgenetic alopecia, is not autoimmune. Testosterone levels can affect older people, and autoimmune-related alopecia can begin at a young age. Furthermore, a recessive gene causes alopecia, and two parents must carry it to pass it on to a child for them to develop it.
If someone asking me this question explains that their dad’s receding hairline started when he turned 40, I say I wouldn’t worry too much. However, if the person asking explains family members of both parents lost hair at an early age, and their own hair has thinned, I might tell the person to consult with a dermatologist.
Is Alopecia Curable?
Sort of! The doctors work hard and research hair loss treatments every day, and the FDA has approved two drugs called JAK Inhibitors that show promising results. People taking them have grown their back hair at impressive rates.
Unfortunately, these medications are a lifelong commitment, and patients lose their hair when they stop taking them. Furthermore, they also lower people’s immune systems and pose significant health risks by increasing the chances of serious infections. Many alopecia patients now ask themselves if putting their health in jeopardy is worth a full head of hair.
If anyone has an interest in reading an article about my experience with JAK Inhibitors, please comment below.
Do you lose hair everywhere or just on your head?
Well. It depends on the person, but I lost hair all over my body. Some of it just never grew into anything in the first place. For example, I’ve never had to shave my legs once in my entire life. As I like to say, hair loss isn’t all bad!
What’s dating with alopecia like?
In my experience, no one has ever cared, and that’s how it should be! Just like any disease, significant others should support their partners and love them the way they are. A person’s appearance changes throughout their whole life. So, if a love interest cares about a lack of hair, then what will they say about weight gain or wrinkles down the line?
In all honesty, though, I remember feeling nervous to tell potential significant others about my condition. Choosing when to tell someone about alopecia depends on the person. Before meeting my boyfriend, I told men after the first three to four dates to lay it out and see if it mattered to them. However, I understand why other people want to wait until much later.
My friend has alopecia. What can I do to support them?
Let them come to you. Not everyone with alopecia wants to talk about it, and if they do, it can pose as a sensitive topic for them. Let the person know how much you love them, and remind them of their beauty inside and out. A simple “hey, you look nice today!” can go a long way for everyone (even people with a full head of hair!)
To learn more about alopecia, please visit the National Alopecia Areata Foundation.
