According to the data of the Lupus Foundation of America, 9 out of 10 women have lupus, and currently, 1.5 million of people suffer from this disease in the U.S. Therefore, this article today will focus on this autoimmune disease, its symptoms, prevention and treatment.
We are going to include two conversations with a specialist nurse, and a patient. Both speakers frequently used the same word: “unpredictable.”
Mallory Dixon, 29, explained her experience with this disease to Medical Daily. She stated, “It’s a disability that you cannot describe because the whole thing about lupus is it’s so unpredictable.”
Describing her personal experience, she speaks with the lightest Southern lilt and sounds both young and purposeful at once. In the photograph attached to her email, an attractive, petite brunette with a taste for stylish clothes smiles broadly.
Lupus comes unexpectedly, but at the same time, it can occur regardless of the age, race or any other criterion. Moreover, it has a wide range of symptoms which may vary in severity and may be changed during life. The doctors initially diagnosed rheumatoid arthritis in the case of Dixon, when she was only 17, but her symptoms just wouldn’t stop for years after.
She admitted, “One of my doctors told my parent I might need to see a therapist.”
Six years after her initial arthritis analysis, a physician added up diagnosed lupus, her medical history, and her many symptoms. A couple of years after, she discovered it almost impossible to breathe and began feeling depressed. She knew something had gone very wrong. She visited the hospital and picked herself up.
“The night before, I used to be scared to go to sleep,” Dixon said. “I tried to downplay the pain, but I had the feeling I was dying.”
On her way to the hospital, Dixon technically died and was brought to life. Consequently, she stayed in the hospital for 86 days, and her condition was treated in various ways: she fell into a coma, was treated with dialysis, received chemotherapy, and spent time on a ventilator. Afterwards, it has been found that lupus has moved into the kidneys and it caused those symptoms and pain. Namely, her kidneys had started to “shut down.”
Dixon stated, “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.” Therefore, she thinks that the essential thing is to “educate young women about what to look for.”
“Debilitating fatigue” is the very first symptom Sarah Stothers, RN, names. Talking with Medical Daily from the Lupus Foundation of America where she works as a national nurse health educator, she lists the most common symptoms (for both females and males):
– Swelling in the feet, legs, hands, and/or around eyes
– Extreme tiredness
– Painful or swollen joints
– Pain in chest when breathing deeply
– Sun- or light-sensitivity
– Hair loss
– 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”)
– Abnormal blood clotting
– Fingers turning white and/or blue when cold
Stothers explains: “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 is often called “the great imitator,” as it often imitates the signs of numerous other diseases, like in the case of lung, bone, heart, muscle, diseases as well as thyroid issues, diabetes, blood disorders, Lyme disease, rheumatoid arthritis and fibromyalgia.
Due to the fact that it shares these symptoms, many experts believe that it is linked to hormonal and autoimmune disorders.
Dixons also said “Lupus does not run in my family. The only thing that does run in my family is psoriasis, which is another autoimmune disorder.”
And this is key: Because many lupus patients are diagnosed with “a second or third autoimmune disorder” at some point in their lives, anyone who is diagnosed with one of these diseases (or whose family history contains one) should be on the lookout for lupus symptoms. By catching lupus early, Dixon said, you may be able to avoid a dramatic flare-up like the one that nearly killed her.
Most commonly, people suffer from the following autoimmune diseases: scleroderma, type 1 diabetes, Hashimoto’s disease, psoriasis, vitiligo, rheumatoid arthritis, inflammatory bowel diseases, reactive arthritis, Graves’ disease, Sjögren’s syndrome, celiac disease, pernicious anemia, Addison’s disease.
In the case of all these diseases, the tissues in the body are mistakenly attacked by the immune system, as if they were foreign invaders, viruses or germs.
Stothers stated, “We know there’s a genetic component to lupus.” However, she added that it does not mean that the person will suffer from lupus, but hormones and the environment are also two important factors. According to scientists, regarding the average age range for diagnosis and the higher incidence in the case of women, estrogen is involved in its development.
Stothers also added “It is predominately diagnosed between the ages of 15 and 44, 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. “
Yet, she has also witnessed lupus in people in their 70s and 80s.
Lupus patients often live long, productive, and happy lives, says Stothers, but to stay healthy, they must monitor their own symptoms as does Dixon. Though she gave up her dream of a high-powered fashion career in New York City, she continues to work from home while advocating for the Lupus Foundation. Naturally, though, self-awareness can be challenging in a busy world, a busy life.
That’s the hard thing with lupus, the unknown of when you’re going to have a really bad flare-up. Everyone has to figure out her own triggers.” Dixon admitted that the hard work, stress and common cold were the triggers of her condition.
Stothers points out that lupus patients are really brave and strong people. “Somehow they make it work. People with lupus are probably the most courageous people I’ve ever met and the most in tune with their bodies. I am very much privileged to know them.”
Dixon also states that the support of her dearest ones, family, and friends, was of great help, but she said that the biggest strength must come from the patient himself. She says:
“At the end of the day, you’re going to be the one to get yourself out of bed.”