According to the Lupus Foundation of America, about 1.5 million Americans have lupus and 9 out of 10 are women. Both patients and specialists agree that this autoimmune disease is “unpredictable”.
“It’s a disability that you cannot describe because the whole thing about lupus is it’s so unpredictable,” says Mallory Dixon, 29.
Mallory is an attractive, petite brunette who sounds both young and determined at the same time.
In terms of the unpredictability of this disease, Dixon explains that it may affect anyone, regardless of their age, race, or ethnic preference. Moreover, the severity of the symptoms varies from patient to patient and the person often experiences symptoms which could not be explained.
Dixon was initially diagnosed with rheumatoid arthritis, but six years later she was diagnosed with lupus due to the many additional symptoms she experienced. Two years later, she felt so miserable and even unable to breathe that she had to go the hospital and seek medical attention.
“The night before, I was afraid to go to sleep,” Dixon said. “I tried to downplay the pain, but I had the feeling I was dying.”
As a matter of fact, she “technically’ did die arriving at the hospital. Then, the doctors brought her back to life and she remained attached to bed for 86 days. During this period, she fell into a coma, received chemotherapy, spent time on a ventilator, and was even treated with dialysis. It was later found that these symptoms were caused by the lupus which has spread to her kidneys.
“They do think with early prevention we can keep lupus from spreading to organs like the kidneys or in some cases, a patient’s heart or brain,” Dixon said. This is why she believes her most important mission is to “educate young women about what to look for.”
Lupus and The Effect It Can Have on Your Life
According to Sarah Stothers, a national nurse health educator at the Lupus Foundation of America, “debilitating fatigue” is the first symptom. She also lists the following symptoms:
- Abnormal blood clotting
- Fingers turning white and/or blue when cold
- Mouth or nose ulcers
- A butterfly-shaped rash across the cheeks and nose (in earlier times this common rash reminded physicians of a wolf’s bite hence the name “lupus,” Latin for “wolf”)
- Extreme tiredness
- Painful or swollen joints
- Swelling in the feet, legs, hands, and/or around eyes
- Pain in chest when breathing deeply
- Sun- or light-sensitivity
- Hair loss
“Some people look completely normal yet they feel awful,” said Stothers, who added “doing the smallest task is impossible.” The disease is often isolating, “because you look so normal on the outside, and that’s probably the biggest thing: ‘But you look completely fine!’”
The lupus symptoms often mimic those of lung, bone, heart, or muscle disease as well as rheumatoid arthritis, Lyme disease, diabetes, blood disorders, fibromyalgia, and blood disorders. This is the reason why lupus is associated with hormonal and autoimmune disorders.
“Lupus does not run in my family,” Dixon said. “The only thing that does run in my family is psoriasis, which is another autoimmune disorder.”
And This is Key: Due to the fact that many lupus patients are diagnosed with a second or third autoimmune disease, anyone who is diagnosed or has a family history of any of these diseases should be on watch. By doing so, a dramatic flare-up could be avoided!
The most common autoimmune diseases are type 1 diabetes, inflammatory bowel diseases, Hashimoto`s disease, Addison`s disease, vitiligo, reactive arthritis, rheumatoid arthritis, celiac disease, psoriasis, Graves’ disease, Sjögren’s syndrome, and scleroderma.
Cause and Treatment
“We know there’s a genetic component to lupus,” said Stothers. However, carrying the gene doesn’t necessarily mean that one will develop lupus. Environment and hormones have a critical role too, especially estrogen, due to the higher prevalence among women.
“It is predominately diagnosed between the ages of 15 and 44,” said Stothers, who added “and that’s the time when women are most fertile.” In fact, many women are first diagnosed while pregnant or after giving birth, when their hormones are in flux, she explains. Still, even this is not entirely definite as Stothers has seen patients diagnosed in their 70s and 80s.
Even though most lupus patients live productive and happy lives, they must observe their symptoms very often to stay healthy. Self-awareness is difficult to maintain in a busy world, meaning that one must make certain lifestyle changes. For instance, Dixon gave up her career and works from how now, advocating for the Lupus Foundation at the same time.
“That’s the hard thing with lupus, the unknown of when you’re going to have a really bad flare-up,” said Dixon, adding that patients have mild, moderate, or severe flare-ups at any time. “Everyone has to figure out her own triggers,” she explained.
Stothers find her patents to be very courageous and brave, saying that she is privileged to know them. Although people like Stothers and other health care professionals offer emotional support, the one received from the family and friends is as needed as the professional help.