Unrecognizable Signs: My Struggle with Discoid Lupus

woman in beach hatFreshman year of college was a difficult time for me. Many things had changed, I was away from home for the first time, I was not among close friends, and my course load was semi-difficult for me to adjust to. With all that going on, there was a noticeable change to my appearance that I couldn’t identify with. There was a round reddish raised sore on my left cheek. I tried to recall in my mind if I had done something to myself to cause this, but nothing came to mind.

Combing my hair in the mirror also became unnerving, because it had begun to fall out more than that average 100 strands a day. My scalp was visible. I figured out where the hair was disappearing from; I was balding on a section of my scalp.

I knew I had been stressing from school and being homesick, but I couldn’t figure out why my skin and scalp were being affected by my stress. That’s when I really began to panic. My mother suggested I come home so my grandmother, who was a registered nurse, could take a look and see what was happening. I was on the next thing smoking going home.

As my grandmother examined my face and scalp, she was clueless about my condition. She concluded that I needed to see a dermatologist. A couple of days later, I was in the doctor’s office being poked and prodded as if I were a science project.

The diagnosis: discoid lupus. It was determined that I didn’t have systemic lupus—there were traits, but I definitely had discoid. I didn’t understand what discoid lupus was, so my reaction was nothing more than a head nod and wondering, “Now what?”

My dermatologist did not have a sound of urgency or true concern in his voice, so I made myself believe that this wasn’t very serious and I would be just fine. The information that I gained from that appointment was:

  • There is no certain cause for this disease.
  • This disease is more prevalent in African-American women than Caucasians.
  • It can affect my face and scalp.

I was handed some cream for my face and told my hair would grow back. That was the end of the appointment. I never saw that dermatologist again, and I put the thought of lupus out of my mind.

Almost twenty years passed; my life was moving along. Planning a wedding brought on demanding pressures that I had not anticipated. Day by day, my face began to show signs of redness, and hair was falling out. I believed that I was having an acne breakout and needed to wash my hair because it was falling out.

I had not thought about symptoms of discoid lupus, so in my mind that was not a possibility. Dismissing all the signs, I went on with my wedding and honeymoon, which happened without a hitch. Coming back to reality, I decided it was time to see a dermatologist.

What I feared became true: my discoid lupus had awakened from its 20-year nap. This time it came with a vengeance. Instead of one lesion, I had several on my face and ears, and my scalp was bald in more than one area. Depression began to set in because I couldn’t understand why it came back ten times worse than before.

If I could identify two things I overlooked during both of my episodes, they would be my high stress level and the symptoms I was experiencing at the time. Looking back, I was under some unbelievable stress both times, and I dismissed the rashes and hair falling out as just a natural aspect of my life.

I have discoid lupus, which, whether active or dormant, is for life. I must pay attention to those little things—stress, fatigue, rashes, hair falling out, etc—in order to gain control of this outbreak, which will limit the hair loss and skin abrasions.

As an African-American female diagnosed with a form of lupus, I have pointed out some important factors that I feel everyone should remember:

  1. Know your family history. If someone in your family has a form a lupus, being tested may be wise for you.
  2. Get informed. Asking a professional the 5 W’s is a great way to start to learn as much as you can about lupus:
    Who can get lupus?
    What is lupus?
    When does lupus flare up?
    Where on/in your body does lupus affect?
    Why is there not a cure for lupus?
    The more you know, the better prepared you are for your flare ups.
  3. Pay attention to symptoms you may have and the various changes that may take place with your body.
  4. Be sure to take your medication and visit your physician(s) regularly. Don’t be afraid to ask as many questions as you can.
  5. If you have to be out in the sun, make sure you wear sunscreen or a hat, or use an umbrella to keep yourself protected.
  6. Make sure your family is educated, as well. You should not have to live with lupus by yourself.
  7. Try to make your life as stress-free as possible.

Today, I am happy to report that my discoid lupus is under control. It hasn’t taken a nap, but it’s not wide awake, either. I see my rheumatologist and dermatologist regularly and I am sure to take my medication and stay out of the sun. Although my face has cleared, and my hair is growing back slowly and finely, I still live with caution.

But I feel blessed that I have my life. As an educator, I have taken on the topic of lupus as if it were a thesis paper for me. Research is the main focus to gain a greater understanding. A great place to obtain information about lupus and its various forms is the Lupus Foundation of America.

Genesa Page is a high school business education teacher at Mirabeau B. Lamar High School, an International Baccalaureate World School in Houston, TX. She has been teaching since 2005.

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  • Nan

    September 6th, 2013 at 3:48 AM

    I have never heard of this. I have heard of lupus but not of dicoid lupus. It certainly comes out in your writing just how much of an impact this has had on you and I am so sorry that it had to happen and show itself during what should have been such a happy time for you. But of course things like this generally show up when we are under the most amount of stress and pressure so going away from home for school for the forst time would ceryainly qualify. It is so frustrating to go to a doctor who seems to devalue you and not really listen or to even just kind of pat you on the head and tell you that things will get better. That may be the case but it could be feeling like it is the end of the world and you want a little more guidance and understanding than that. I am hopeful that you have now taken control of your health and that you have found your way back to wellness, and I wish you the very best.

  • Pamela Boyd

    September 6th, 2013 at 4:37 AM

    I read your story and it could have been my story with a few changes. My story began like yours but my skin has not cleared up, my scarring and discoloration, along with losing my hair still exist. After having Discoid Lupus for over 20 years i have now been diagnosed with SLE. I’m African American, 58 years old and was first diagnosed in 1984. As you stated I take my meds, see my doctors on a regular basis and I try to stay informed. When I was first diagnosed with Lupus there was hardly any information or treatments available so I guess that’s why my scarring and other symptons remain. I have learned to live a normal (for me normal) life and made the changes necessary. I know that Lupus is a life long illness and I accepted that fact and I’m grateful that my Lupus is not as bad as it could be. There are others with Lupus that have suffered with extreme pain and surgery. My heart goes out to everyone that has Lupus and I pray for a cure.

  • Stefanie

    September 6th, 2013 at 9:20 PM

    Thank you for sharing your very personal story old friend (CHS). As African Americans, we must do better as a community of educating ourselves, our families, and others on illnesses and incurable diseases that leave us debilitated or lifeless. Please continue sharing your story! Take care!

  • clara

    September 10th, 2013 at 3:58 AM

    Yes, your voice is a strong one for a disease that doesn’t have one, for I too have never heard of this but my heart goes out to you.

  • Deneen

    October 2nd, 2013 at 5:12 PM

    Your story is my exact story. I too was diagnosed with Discoid Lupus about 20 years
    ago. My eldest son was about 2 years old. I had a red raised bump on the left side of my nose, I thought it was acne, mosquitoe bite. The first dermatologist I went to just gave me topical cream for a few months and then a skin biopsy that didnt show anything. Then I decided to go to another doctor who did a deeper biopsy and showed a diagnosis if. Discoid Lupus. I had no clue or ever heard if this, I was terrified. I have had several flare ups though out the years, my scalp and my ears. Stress triggers these flares so I have learned try to live the most stress free life as possible. I find that yoga and excercise is a great help for me and not to sweat the small things. Thank you for sharing our story!

  • Kare

    November 3rd, 2014 at 12:03 PM

    Thankyou for sharing your stories, I have been diagnosed with discoid lupus for about a year. They are healing very slowly not sure whether they are scarring but have used the cream and the meds daily. This is a cruel disease and I hope one day they find a cure stay healthy and know that I care.

  • Jenny

    October 16th, 2015 at 7:56 AM

    Thank you for sharing your story. I have been diagnosed with D.L. and I learned a great deal on my own. My Derm. PA has not been very helpful and she did not believe me when I tried to tell her about my body pain – which was extreme. My meds help me a lot but I am still alone in some ways. In the dark at times. I rarely find anything online that makes me feel better. You have made me feel better and I know there are people out there with SLE (systematic Lupus) but D.L. is Lupus. It is hard to get your mind around this at first but it is okay to say it- “I have Discoid Lupus”. Apparently I have had this for over 10 years and why it did not get worse is beyond me but lets all hope that we can continue to be happy and strong . My heart to you and all Lupus patients.

  • ebony

    January 9th, 2016 at 8:33 AM

    I was diagnosed with lupus SLE and I have scarring in the scalp and the scares are very sore does anyone else scares feel like this?

  • Sandra

    March 25th, 2016 at 9:11 AM

    I was recently diagnosed with DSL. I’ve had eszema since childhood. I noticed unexplained patches that were out of the ordinary. My dermatologist requested blood work and discovered my diagnosis. My goal is to learn as much as I can and educate myself and others. Your story is not only enlightening, but also inspiring. Stay well!

  • Lynne

    July 12th, 2016 at 4:57 PM

    I was diagnosed with discoid lupus six years ago, 5 months into a horrible flare that no doctor could seem to diagnose. Six years and many flares and scars later, I have found a miracle that stops the outbreaks before they start. I don’t know if it will work for anyone else, but it’s been a miracle for me and I HIGHLY recommend that anyone with DLE try this! It’s the Oxygen Zone Tool, and I purchased it from a neighbor who is a Beauti Control representative. It’s the only thing I’ve ever ordered from this company. My neighbor told me it would help, I doubted her, I had the beginning of an outbreak, she used it on me, and it stopped it in its tracks. I bought one from her. Since then, I’ve had the start of three outbreaks, (itchy skin rash on my face), I used the tool on it, and my skin was clear within 24 hours with no medicine or discomfort whatsoever! I swear this has been an answer to my prayers!

  • Matt

    February 13th, 2017 at 12:31 PM

    I’m a rare caucasian male with discoid lupus, and it’s definitely helpful to read all of your stories. I’m 31, and experienced a solid 8 year gap in flares. Moving to florida, with its abundant sunshine, has been a challenge. But I wanted to echo the caution to be mindful of your stress and fatigue. It is crucial, in order to control the condition, to strive for mental/emotional health. I got seriously stressed out this weekend and, yup, an immediate flare. It’s a challenge, but it’s one of those things that can lead to wellness beyond what you might achieve without having to up your game. Therapy, exercise, yoga, meditation, and mindfulness training are all really helpful in controlling stress. And, of course, wear a hat and use sunscreen even on cloudy days and at night. Photosensitivity is no joke.

  • Stacy

    February 18th, 2017 at 10:07 PM

    First of all THANK YOU and BLESS YOU for saying this for Discoid patients! We are not heard! DOctors dont seem to care or understand that it is very PHYSICAL for some of us. Secondly- yes it is widely considered an ethnic disease . I am not completely white so….maybe that it?? I dunno whatever….does it matter? You have an important thing here so……I am not alone eh? Nope. My doctor thinks it is just a skin thing. A mere thing I can go to a dermatologist for. BUT– thats a $75 co-payment I cant always afford and the derm. PA thinks its just bullsh*t. SO…..I have Systemic symptoms. I have to live with this. I NEEDED to know I am not alone and thank you. I dunno what to do or what will happen but I dont dwell on it. I get sick and try to push thru it. I work 12 hours a day in a factory and I push thru it. I need my rest but I have to keep on. I have to put food on the table. I am physically effected but how can i find a specialist who will listen? A rheumy? Hope so. But thank you again and peace!

  • Sydney

    January 22nd, 2020 at 10:46 AM

    I really wanted to write a simple note to be able to express gratitude to you for all of the nice tactics you are posting here. My prolonged internet investigation has at the end of the day been compensated with reliable tips to write about with my colleagues. I would assert that we readers are really fortunate to be in a useful community with many wonderful professionals with interesting points. I feel truly happy to have used your entire website page and look forward to really more brilliant times reading here. Thanks again for everything.

  • Roxanne

    March 24th, 2021 at 9:56 AM

    When I get the red patches on my face or scalp I lose the hair there in scalp. If I touch it or rub it? It is painful. Has anyone lost any of there eyelashes before??

  • Pamela

    April 11th, 2021 at 6:24 PM

    Thank you for sharing your story. There was a lot I did not know about Lupus. One of my friend’s friend had it and I never really understood it, until I began doing some research. It is a good read. I think there needs to be a lot more research done to help those with this disease. I hope that you being to feel more comfort and struggle less with this form of lupus. :(

  • Kathy

    August 10th, 2022 at 6:26 PM

    Hi all, my episode of discoid lupus began with getting Covid at the beginning of the pandemic. I had the rash all over my body, face and head. Surprisingly, I continued to have a good attitude thru it all because we all saw people dying of Covid, so I believed I got off lucky. I went to several different dermatologists and they did not help at all. When it all got to much I found a dermatologist at UTSW. It is a teaching hospital, so you have nothing but the best doctors there. He knew exactly what is was and placed me on immune suppressants immediately. Thank God for my dr. He gave me tips on how to manage the pain and itching. He was there when I lost almost all my hair. So now, I hope I can pass on what I learned. Soft thin towels wet with water placed over the tops of rash. This helped a lot. When the rash started to heal, I wore the baggiest, softest clothes turned inside out ( so the seams didn’t irritate). I used super collagen + vitamin C and biotin tablets to help my hair grow back. I am pleased to say that my hair did come back. Listen, we all feel like this is never ending and that our life will never be the same, but it will. Family, friends and lots of prayers kept me sane. Ask for help when you need it, and keep your head up. I refused to let people who stared at me get me down. After all, they don’t understand. Today my lupus is in remission, and I pray that lasts. But I know that if it doesn’t I have my support system at home and online. I pray for you all.

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