The Lupus Foundation of America counts around 1.5 million Americans affected by lupus, and according to statistics, nine out of ten are women. This autoimmune disease is considered as highly unpredictable by both, specialists and patients.
Mallory Dixon is a young and determined lupus patient (29). She also agrees that this disability can’t be described as it’s very unpredictable.
As she explains, lupus can affect everyone, and doesn’t know of race, age, or ethnic preference. Patients experience symptoms different in severity, and most of the time they can’t explain them.
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
Sarah Stothers, RN, a national nurse health educator, who works at the Lupus Foundation of America, in the interview for Medical Daily, listed the most common signs of lupus, for both sexes. The first one she listed is “debilitating fatigue”.
Also, she continues:
– Sun- or light-sensitivity
– A rash in the shape of a butterfly, spread across the nose and cheeks (this rash reminded doctors of a wolf’s bite in earlier times, and it gave the name of this disease, “lupus,” is the Latin word for “wolf”)
– Abnormal blood clotting
– Extreme tiredness
– Painful or swollen joints
– Nose or mouth ulcers
– Swelling around the eyes, hands, feet, legs
– Pain in chest when breathing deeply
– Fingers turning white and/or blue when cold
– Hair loss
“Some people look completely normal yet they feel awful. Doing the smallest task is impossible, because you look so normal on the outside, and that’s probably the biggest thing: ‘But you look completely fine!’”
This autoimmune disease share symptoms with several other diseases, like thyroid complications, Lyme disease, diabetes, fibromyalgia, rheumatoid arthritis, heart disease, etc. As such, many experts believe that it’s linked to autoimmune and hormonal disorders.
Moreover, Dixons clarified:
“Lupus does not run in my family. The only thing that does run in my family is psoriasis, which is another autoimmune disorder.”
Actually, many individuals diagnoses with lupus have been diagnosed with another autoimmune disorder in their lifetime.
Hence, you need to be careful about the symptoms of lupus if some of these diseases run in your family, or if you’re already diagnosed with any of these autoimmune diseases. That way, you can avoid lots of complications later in life.
Here are the most common autoimmune diseases that people suffer from:
– type 1 diabetes
– Hashimoto’s disease
– rheumatoid arthritis
– inflammatory bowel diseases
– reactive arthritis
– Graves’ disease
– Sjögren’s syndrome
– celiac disease
– pernicious anemia
– Addison’s disease.
For all these ailments, your body tissues are mistakenly attacked by the immune system, like they were foreign invaders, germs, or viruses.
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.
Although most lupus sufferers can have happy and productive lives, they must watch their symptoms very closely to stay healthy. We live in a busy world, so maintenance of self-awareness can be rather difficult, as these people must make some changes in their lifestyle. Such example is Mallory who gave up her career to advocate for the Lupus Foundation.
She explains that every lupus patient will have to figurate out their own triggers for their flare-ups which can be mild, moderate, or severe. Although health care professionals like Stothers provide emotional support for their patients, the support from their closest ones is equally important.