Scarring Alopecia & Chronic Hair Loss Is Prevalent Amongst Black Women - Nola Johnson Shares How Her Hair Loss Journey Led Her To Homeopathic Healthcare
In the past we’ve shared some hair growth oils for Black women such as Glammed Naturally, Love & Snow and Afro Hair & Skin Co. Additionally, we’ve also shared an indie hair growth brand company founded by a young women who suffered CCCA Alopecia called Black Hair & Skin Care. In that interview we briefly discussed CCCA Alopecia and other chronic hair loss illness that are extremely common within the Black community. Today we’re excited to dive in a bit deeper to understand a young woman’s personal journey with scarring alopecia. Nola Johnson is embarking on the three year anniversary of her CCCA diagnosis and is eager to share how her hair loss trauma directed her on a path to seek homeopathic healthcare.
Check out this interview:
What is scarring alopecia?
Scarring alopecia’s do not create visible scars, but rather they attack the hair follicles beneath the skin. If the disease advances quickly or is left untreated the hair follicles can be damaged, or scarred, beyond repair. This results in a shiny bald spot where a follicle, or pore, is no longer present. The specific type of scarring alopecia that I have, Central Centrifugal Cicatricial Alopecia (CCCA), is predominantly found in women of African descent. At this time, there is still more research needed to understand the cause of the disease and while there are numerous treatment options available, there is no cure.
Some great explanations from the professionals:
When were you diagnosed and what were the symptoms?
During the spring of 2017, I began to notice changes in the hair at the crown of my head:
REALITY: Wouldn’t hold a twist out for as long as the rest of my hair. LOGIC: I must be moving around in my sleep more. Maybe I need a new bonnet? I bought a new bonnet.
REALITY: Breaking and becoming a lot shorter than the rest of my hair. LOGIC: This section of my hair has always been coarser than the rest, maybe that’s why it’s breaking and not holding a twist out. I booked my first DevaCurl appointment thinking a new cut and style regime might help.
REALITY: Burning and itching scalp LOGIC: I must be allergic to something. Bought new bobby pins, shampoo, conditioner, and styling products. Maybe my scalp is dry. Starting oiling my scalp regularly.
In May 2017, I was taking a walk outside and felt my scalp getting hot in an area that wasn’t parted. When I got home I took a picture of the crown of my head and noticed that my hair was thinning. I scheduled an appointment with a dermatologist that specializes in hair loss June 2017 and after a biopsy was performed, was diagnosed with Central Centrifugal Cicatricial Alopecia (CCCA) in early July 2017.
What was the journey of hair loss for you like regarding self esteem and mental health?
Before I started to lose my hair - I loved it. It’s fair to say that I appreciated it - for growing fast and being easy to style. I took a lot of pride in never having braids or a weave - that what you saw was me with a little concealer and some chapstick most days. After going natural in 2009, about every two years I’d get a pixie cut, let it grow out, and repeat. The year before my diagnosis I wanted an undercut but my hairstylist didn’t want to cut my hair, so I cut one side of my head as short as I could with scissors. It was just the push she needed to make both sides even.
I still had an undercut when the hair loss began. I spent every wash day crying in the shower as more and more hair came out in my hands from my crown at first, but soon just the top of my head overall. My scalp would ache for hours afterwards. It was incredibly demoralizing. I found myself looking at other people’s scalps everywhere I went to see how mine compared. It’s something I still catch myself doing on occasion.
Early on, I made the decision to remove anything related to hair (products, stylist, style inspo, etc.) from my Instagram account because I had so many feelings of jealousy and inadequacy over not being able to part my hair down the center or how highlights would only make my scalp more visible now. I bought an eyeliner pencil to make little black dots on my scalp each morning before going to work to camouflage the loss. I was terrified that someone would notice or that I’d no longer be viewed as professional or well-groomed.
It took six months before I told anyone. Now three years later, only six people know - including my parents. I still haven’t told my brother because I don’t want his girlfriend with beautiful curls to know - more of that jealousy creeping up. The other big reason I haven’t told people is because I feel bad/vain/embarrassed/silly for missing my hair. To my knowledge, the deep parts that I now wear have been covering it up. So is mine really that bad if I can hide it using my own hair? It then feels inappropriate to be complaining or talking about my hair loss, when I know there are others diagnosed with alopecia who aren’t as fortunate. Let’s also not forget - I’m healthy, actually healthier than I’ve ever been, I just have less hair than I did three years ago. Is that really worth an announcement? It hasn’t felt like it.
There was about a year and a half where I was seeing some improvement. The eyeliner pencil had been retired and in its place I adopted hats, turbans, and headbands. I was accepting my new normal. Okay, sometimes hoping to be that one miracle case with 100% hair restoration, but largely accepting. Then January 2020, I had another tearful shower and it crushed me all over again. One of my new year resolutions had been to get serious about dating, but in this age of swiping I felt less confident in my ability to find someone that looked fondly on my hair desert that was only expanding.
Then I got angry thinking about how women are largely expected to go through puberty and then stop physically changing and how I was only feeding into those expectations with all my feelings of self doubt. So, I decided to stop carrying my alopecia like a shameful secret and simply look at it as a physical change that my body is going through.
What healing remedies didn't work and why?
Instead of saying that a treatment didn’t work, I’ll just share the treatments that I’ve tried and am no longer utilizing. I don’t want to discourage anyone from trying the options that their healthcare provider might recommend as they could experience a different outcome. It’s also important to make sure that you understand what the intended outcome is from a remedy - treatment of symptoms vs increased hair growth so that you can manage your expectations accordingly.
Plaquenil
Kenalog injections
Triamcinolone acetonide
Again, with there not being a cure for CCCA I could continue to have flare ups, so investing in more expensive treatments like platelet rich plasma, stem cells, or a hair transplant aren’t advisable until I’ve had a number of years without any symptoms.
Share your journey of homeopathic healthcare?
I get so excited to talk about Dr. Nathani at Holistic Vitality Center because she changed my life. After six months with my first dermatologist, none of my symptoms had subsided and my hair loss was only getting worse. I was also frustrated that no lab work had been ordered to understand the why. So, I scheduled an appointment because of my hair, but what I’ve gotten in return has been far greater. Dr. Nathani spent over two hours with me during my first appointment, and at least an hour each one since. During our first appointment, she asked me to tell her everything about my life from birth to present day that felt important. It was amazing to listen to her turn my odds and ends narrative into a medical story of cause and effect. Knowing that inflammation and alopecia are correlated, she ordered labs to get a baseline and sure enough my markers were through the roof. After my first three months of treatment that included a detox, Whole 30 to the extreme diet, and a supplement cocktail I was able to transition off of all my prescription medications with no more itching or burning scalp. Six months in, my hair had stopped breaking and I was able to wear my first wash-n-go in over a year. I was encouraged by the results, but I found peace in the answers and understanding that she offered.
One day after more blood work revealed high stress markers, Dr. Nathani asked me if anyone had ever talked to me about anxiety. It was then that the course of my life began to shift. Imagine explaining away a multitude of behaviors as quirks for over 20 years only to find out that they were symptoms of an underlying issue. I was excited to have an explanation for why - as many people had asked me to explain just that and I could never offer more than, this is just who I am. Again with the help of supplements, the always-on-high-alert/buzz/edge has diminished and at first, I missed it. If I’ve been in one long term relationship, it’s been with anxiety. However, the further away from it I am, the more grateful I feel for my new normal. Not only do I show up differently in my personal and professional relationships, but my eating habits, sleep, reproductive health, and stress management have improved over time as well. As with my hair loss, I’m not cured. Anxiety and I will always have a connection, but it’s one that I manage now.
There were a number of physical and mental signs that should have led me to seek help years before my hair started falling out, but I accepted my A+ physicals and didn’t push for more. So now, when I reflect on my hair loss I still have moments of negative feelings, but the feeling that comes up most often is appreciation. Hair loss taught me how to advocate. Hair loss made me healthier. Hair loss was the physical push I needed to shift mentally. Hair loss gave me a life that I didn’t know I was capable of leading.
What advice would you give others suffering with it or those who think they may have CCCA - especially during this time of quarantine?
DURING THESE STAY AT HOME DAYS
Quarantine and (virtually) Connect. The Cicatricial Alopecia Research Foundation (CARF) website has a list of expert dermatologists globally - I’d start there and see if you live near any of them. I’ve also found the quarantine to be really helpful when it comes to opening up access to experts within the field. Many are offering telehealth appointments. I’ve also started following CARF and some of the dermatologists from their list on Facebook and Instagram. I’ve also taken a lot of comfort in finding representation such as @ginaatinukeknight.
There have also been Facebook Live sessions and webinars offered that have been really informational. (Ex: Video Chat on Scarring Alopecia)
Manipulate your hair less and be active. Instead of wearing my hair out, I’ll wear twists for a week and just pin them up under a satin lined turban or baseball cap. I’ve also found that I’m more active with this new hair styling and work from home routine - taking conference calls while I’m out for a walk or attending virtual yoga classes during the week now that my commute is just from room to room. I’ve read some articles that believe there is an association between scarring alopecias and humidity or heat, but I’ve found the additional physical activity to be a great healer for my mind and body.
Start a hair album on your phone and take notes. I’ve found it helpful in documenting my journey by taking a picture of my scalp every two to three months. It is also a great resource when meeting with a dermatologist or physician to provide them with historical reference points. Keeping notes on how your scalp feels, especially if you’re trying different products or medications is really valuable. I’d also encourage everyone to only change one thing at a time, then waiting a few weeks, so you can easily identify which changes are positive or negative.
IN GENERAL
Advocate for yourself. Given the limited research and experts within the field, it can be challenging to find a physician that you trust. If you don’t feel like you’re being heard or a treatment is making things worse instead of better, be persistent in your quest to find the right dermatologist or physician. The same advice applies when communicating with your hair stylist. Find one that supports your hair goals, shows kindness, and doesn’t recommend styles that will exacerbate your loss.
Cut your hair early and trim it often. When your hair is falling out the last thing you might want to do is cut it, but this will help to reduce tangles and the loss of healthy hair if you can stay on top of the breakage.
Be kind to yourself. It’s important to remember that there isn’t a cure, so seek out a treatment plan that you can commit to mentally and physically. From acupuncture and CBD to prescription medications and steroids - I’ve tried it. Currently, I’ve landed on topical minoxidil (Rogaine) and supplements as my treatment of choice. However, that doesn’t mean that I may not order a bottle of the next hair supplement Instagram’s algorithm decides is perfect for me or experiment with wigs. And that’s okay. Safely explore your options to determine what’s best for you at this time and give yourself the grace to change your mind later on.