Lupus and Hair Loss: How to Deal

(Last Updated On: October 5, 2015)

by contributing author: Victoria Richards.

For most of us, our immune system is our friend. It’s there to help our bodies defend against threatening diseases, viruses and bacteria. There is a sense of relief in knowing that if we properly take care of our bodies, it will be there to protect us. But what happens when you’re diagnosed with a disease that turns your immune system into your enemy? That enemy has a name, and it’s “Systemic Lupus.”

According to lupusNY.org, 90 percent of lupus patients are female, and African American women are three times more likely to have lupus than Caucasians. Unfortunately, this topic hits close to home for me because my best friend suffers from this autoimmune disease. So while I can’t say I know what it feels like to suffer from lupus, I have had first hand experience seeing my loved ones live with it. My friend Ranika Jones is proof that living with lupus doesn’t mean you can’t enjoy your life, and it definitely doesn’t have to be a death sentence.

Courtesy of Ranika Jones, Lupus Hair Regrowth: Before
Courtesy of Ranika Jones, Lupus Hair Regrowth: Before

One of the unfortunate symptoms of lupus is hair loss. This is an awful experience for anyone to go through, but for women it can almost feel catastrophic.

“I was twelve. At first it was just shedding, and then as the lupus got more progressive, it was coming out in big clumps after my mom would wash my hair,” Ranika shared.

With pressure in the mainstream media to have long golden hair flowing down our backs, one can’t help but feel ostracized at times. Hair loss can be caused by the type of lupus you may have or the medications you’re prescribed. It isn’t uncommon for a patient to lose hair on their head as well as eyebrows, eyelashes or entire body. Luckily, hair loss is often reversible.

“It started growing back when I was fifteen. My doctor did ask me if I wanted to be put on the list for Locks of Love,” comments Ranika. “I declined because my grandma had taken some locks of my hair and put it in the Bible, and I just knew it would grow back!”

Courtesy of Ranika Jones, Lupus Hair Regrowth: After
Courtesy of Ranika Jones, Lupus Hair Regrowth: After

The most important piece of advice in combating this issue is maintaining your lupus. Basically, by keeping your lupus under control, you can keep your hair loss at a minimum and hopefully look forward to it eventually growing back. For starters, treating your lupus as soon as possible is the best way to keep hair loss from becoming irreversible and most importantly to keep you alive and well. Get with your doctor as soon as you can to start discussing options. If you see any lesions on your face or scalp, you should contact your doctor immediately. This can become a concern because scarring leads to irreversible hair damage. Medical professionals also recommend protecting yourself from the sun as often as possible. Lupus patients often develop sensitivity to the sun and this can cause flare ups leading to more hair loss. Your doctor will also be able to determine if the hair loss is from your medication or a flare up. If he/she determines that it is caused by the former, they may adjust your prescription depending on how stable your condition is.

When asking Ranika how she coped with her hair loss at the age of twelve she says, “I actually didn’t deal with it. I just pretended like it didn’t exist, and I wore a hat because I just wanted to be normal.”

There must be a way that we can come together as a community to provide more research on this sensitive subject. Women, and especially young girls, shouldn’t have to suffer alone. However, on the bright side, this may be a way for you to discover new styles that you would like to try out for the first time. Wigs and hair extensions can be a stylish and affordable way to cover up hair loss. Or if you don’t prefer added hair, there are lots of different hair accessories and scarf trends that you can try as well. Always consult a doctor before trying over-the-counter hair loss treatments.

Below is a list of informative websites on how to prevent and manage hair loss from lupus.

www.mollysfund.org

www.lupus.org

www.lupusny.org

Lupus and Hair Loss: How to Deal