Individuals diagnosed with lupus frequently encounter the distressing occurrence of hair loss, which can present a significant obstacle to manage. Gain insight into the personal experiences of lupus patients who have confronted this challenge firsthand.
Janay Townes
“As an African American woman, my hair was an essential part of who I was. It was a source of pride and joy, and I invested a great deal of time and energy into keeping it healthy and beautiful. However, I began to notice that it was falling out at an alarming rate, and I soon lost track of how much hair I was losing. After several episodes of hair loss, I decided to take matters into my own hands and cut it all off without hesitation. It was a drastic step, but I felt like I had no other choice. Unfortunately, even after seven years, my hair has yet to fully grow back. Despite this setback, I have come to appreciate my short hair as it requires minimal upkeep and allows me to embrace a new style. Moreover, I have found that if I ever want long hair again, I can always opt for a wig or a weave. The most important thing is that my hair loss caused by lupus does not define me. I am more than my hair, and I am grateful for the opportunity to explore new ways of expressing myself.
Tricey Ushery
“I was diagnosed with Alopecia Areata in 1994 and I was devastated at the loss of my hair. It started out as a small spot in the back of my head and I thought at the time that I had put a too strong perm in my head. That was not the case. Over time my hair came out in patches and I hid it at the time with weave. I was embarrassed to go to get my hair done so I learned how to put weave in my head. I used bonding glue and would pull the weave out when it was time to come out causing me to lose more hair.
I hid behind weave for years and wigs and at that fine the only wig that was out was the bob wigs. I begin to get creative and I would wear the wigs backwards and style it differently. People did not know how insecure I was about my hair loss because I looked good in whatever wig I had on. I went to the dermatologist and they gave me shots in my head and that was the most unbearable thing ever!!! At that time, I was not confident enough to go bald as I have now.
I was diagnosed with lupus in 2009 and that attributed to more hair loss. I had fun with my “girlfriends” and changed them often and no one knew just how low my self-esteem was because of my hair loss. It was not until July 21, 2019 that I had the courage to shave my hair bald and wear it for the world to see!!! That was the best thing I could have ever done!!!! Although I look good in my “girlfriends” (wigs) I have come to love me in my most natural state....no hair at all!!! Be blessed and know that you are!!!!”
TaNiska McKenzie
“At the age of fifteen years old, you are just on your way to the middle of your teenage years and your body is starting to prepare for womanhood. Your thoughts are changing and so is your body, but for me my glow-up was a little different. This change seemed different, yes, my body began to change and my hips curved, my breast was noticeable and thoughts I spoke about, became more logical verses not being so nonchalant; but suddenly my joints would hurt badly. What was a girl especially in her teens with rashes on my elbows and face to do?
My mom decided to take me to every doctor including the only dermatologist in Grand Bahama, Bahamas who winding up diagnosing me wrong. Everyone knows that children have empathy so, rumors started to spread. I was asked to stay out of school because allegedly they did not want me to expose the school’s faculty or its students to anything and vice versa. I did not even get to do job training because people thought I was contagious; thank God my grades were good enough to graduate with all A’s. As time went on doctors would request biopsies of my lesions and the results stated that it was Discoid Lupus for sure.
Further down the line I was diagnosed with Chronic Cutaneous Lupus, my symptoms matched exactly the scarring and discoloration in my ears, face, and entire body with Cutaneous Lupus, in fact the devil had more gifts to give. I was also diagnosed with Mixed Connective Tissue disease which infected my skin even more and, I also had three traits out of the five traits of CREST. Two of my fingers were removed because of Reynaud’s Phenomenon, I was horrified.
In 2003 I had my first big flare and it seemed like a true hazing to officially worthily deemed me qualified of being a part of the Lupus society. Every single part of me, even my nose had a sore. Over the years, lupus has taught me I had to love me as I am. Never allow the world to place me in a box to define what beautiful meant. Having Lupus over the years have made me a strong woman, I was only sixteen when I was officially diagnosed with Chronic Cutaneous Lupus and I’m now thirty-eight years old now and I know for sure God has protected me from many insults on my body. I look at my scars as battles in which I have won, I pray that fighting Lupus lines up with my purpose to be an inspiration to anyone being the evidence that we can have a chronic illness and still be motivated to push through the rough days, we learn our limits to smile knowing life is such a special gift although we have Lupus, Lupus does not determine how we should live and what we can accomplish.
In 2017 Lupus tried again but failed was developing Avascular Necrosis of both femoral heads in my hips leaving me wheelchair bound. I have been trying to get a double hip replacement but living in the Bahamas it is a little difficult to get the best healthcare, due to the Avascular Necrosis my training on becoming a nurse has been suspended until I can walk again. I pray blessings upon each person who reads this as I sit in my wheelchair typing a tiny bit of my story, please be encouraged we are all special.”
Swan Betty
“My name is Swan Betty and I am the founder of the lupus organization Purple Wings. I have SLE/discoid lupus for about five years now. Discoid lupus caused painful blistering sores all over my body from head to toe. At one point it was so bad that I could not even wear clothing, after multiple medications coupled with prayer ,my sores did get better but now I am scarred from head to toe. Living with the scars left behind was tough but I have learned to accept it. I appreciate the skin I am in because my war marks show I fought a hard battle and still I overcame it. I still experience lupus symptoms, but I have learned to focus more on being positive and using my journey to inspire others. You can live life despite lupus, lupus does not define me instead I defy it!!! I am a lupus warrior and so are all of you God Bless.”
Amy is the CEO of Shape It Up Sis LLC On Instagram @shapeitupsisllc. She has been living with lupus for the past three years. When she first started to experience symptoms in late 2016, she did not know what was happening to her body for months, and was back and forth to the emergency room to be turned away time after time. Amy found myself falling into a depression. She was miserable and in constant pain and no one had answers. Amy’s entire body was in pain and experiencing tingling, burning sensation, pins and needle feelings and still no one had answers.
Sometime in 2017 she finally got a doctor who actually cared and ran test and one test was an ANA which came back positive so she was referred to a Rheumatologist and more test were done. Amy was diagnosed with Lupus, RA and Sjogren’s, she was relieved she finally got a diagnosis but also sad at the same time. She cried and cried over and over stressed, miserable and gained over 40lbs. One day she looked in the mirror and said to herself “Shape It Up Sis” and since than she has completely changed her lifestyle. She eliminated meats, diary, gluten, sodas, etc. The foods that we eat play a major role in our health because of all the chemicals they put in the foods today. Amy takes herbs daily such as CBD, Sea Moss, Bladder Whack, Elderberry just to name a few. She exercises 4-5 times a week using her workout program she created, and her detox’s using her detox products.
Amy has lost the weight she gained while on steroids and her lupus is more controlled now from changing her lifestyle versus when the doctors were managing her. Her advice to anyone is RESEARCH, RESEARCH, and make lifestyle changes. Avoid people who make things all about themselves. Lupus will show you exactly who your true friends are. If people (yes, even family members!) make your struggle all about how it affects them, it is time to cut them out of your life.