Living With the Skin We’re In
Lupus warriors Elena Anciro and Barbara Leech discuss their experiences with lupus skin rashes.
Barbara’s Experience
When I was a teen I had horrible skin; skin that was mottled with acne and brought me such ridicule and shame that I usually came home from school and wept. Now as an adult, lupus rashes stir those same feelings of self-doubt and shame.
The malar or “butterfly” rash on the face is one of the most widely recognized symptoms of lupus. It is red and slightly raised and looks like an allergic reaction. Some people with lupus do not experience this rash, and thankfully it only happens to me when I am in a full-blown flare.
When it does come, I am horrified by my reflection in the mirror. It is hard to hide, even with the best makeup, and it brings on questions from people.
It typically goes something like this: someone asks about the rash, and I tell them that it’s lupus. They proceed to ask me what lupus actually is. I get exasperated having to explain the disease, and they act as though it’s contagious. I briefly explain that I’m not a leper, and find myself fed-up again.
People living with lupus deal with other skin issues as well like lupus bruising. I’ve experienced discoid rashes on my arms and legs, painful and expensive biopsies to determine whether or not lupus caused them, as well as sores in my nose and mouth. All are very common skin issues with this disease and leave you feeling like the lupus is eating you alive.
Elena’s Story
When I was told that my particular kind of lupus could potentially affect my organs, my skin had not entered my mind. In fact, I thought of every other vital organ except my largest one.
It’s easy to forget that our skin is our bodyguard, protecting our internal systems from environmental attack. It is our waterproof (yet selectively absorbent), regenerative messenger to our nervous system.
According to the Lupus Research Alliance, four out of 10 official criteria for systemic lupus are skin-related: Malar rash, discoid rash, sensitivity to sunlight, and oral ulcerations.
Looking back, my lupus symptoms started with my skin, but at the time I wasn’t aware that it was connected to a larger condition. I had large hives on the back of my legs, as well as a malar rash, which has been the most consistent of my symptoms, even in times of low lupus activity.
In my case, I ignored my rashes because I didn’t have the right information, which could have provided insights into my lupus activity and treatment.
Understanding and Coping With Lupus Rash
There are four main types of rashes that can occur and they play an important role in establishing a lupus diagnosis. It is also important to have a keen, general awareness of your skin health since 60-70 percent of people with lupus report some kind of skin problem.
Acute Cutaneous Lupus Erythematosus (Malar/Butterfly Rash)
Malar comes from the latin root word “mala,” which means cheekbone. Malar rash most often occurs over the cheekbones and the bridge of the nose in a butterfly shape, hence it’s other name, butterfly rash.
Butterfly rash is seen as a typical lupus symptom, occurring in 40 percent of patients. The butterfly shape of this rash is also the symbol that is most used by lupus organizations and awareness campaigns.
According to Lupus UK, “it can appear as a blotchy pattern or completely red over the affected area, and can be flat or raised. The rash can be mild or severe but is not usually painful. It can be itchy if it is more like a rash than a blush and some patients even report a ‘hot’ feeling with more severe malar rashes.”
Butterfly rash can be triggered or worsened by UV rays from the sun or fluorescent lights. Fortunately, this kind of rash can resolve without scarring.
Subacute Cutaneous Lupus Lesions
There are two types of subacute cutaneous lesions, both of which are photosensitive.
Molly’s Fund describes the first type as red pimples initially, developing into psoriasis-like lesion with red, scaly patches that occur on the arms, shoulders, neck, trunk, and less so on the face.
The second type is a flat lesion, which expands outward as a red-shaped lesion with some scale on the edges. The inner centers of these lesions gradually fade, creating red circles with lightened insides.
Appearing on the face, neck, chest, arms, and back, these lesions usually heal without scarring. However, in some cases, a non-depressed scar or area of de-pigmentation is left in place of the lesion.
Chronic Cutaneous Lupus (Discoid Lupus Rash)
According to Lupus UK, discoid lupus is only found in approximately 20 percent of SLE patients, but it also occurs in people with no trace of systemic lupus. Their lupus is only skin-related.
Only one in 10 people with skin-related discoid lupus will develop the systemic form of the disease.
Red, scaly, and thick, these lesions occur most often on the scalp and face, but can also appear on other parts of the body. The lesions are usually pain and itch-free, but scalp lesions can cause hair loss that could become permanent if those lesions scar when healed.
Discoid lesions are photosensitive and can result in scarring and discoloration. Long-standing lesions are at risk of developing cancer, so it is important to monitor skin changes and consult a dermatologist.
The singer Seal is an example of a famous singer with discoid lupus. His scars are what remain of his facial lesions.
Bullous Lupus Erythematosus
This type of rash is arguably the most photosensitive. Bullous rash manifests as fluid-filled blisters on areas of the skin directly exposed to sunlight.
Hives/Welts
Both hives/welts and bullous rash are outside of the four main types of lupus rashes, but are still known to occur in lupus patients.
