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, depicted 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.”
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.”
After 6 years of the initial diagnosis, one doctor reviewed her state, examined the symptoms, the medical history, and identified lupus. Dixon had the feeling that something was terribly wrong for years before and she decided to go to the hospital. She explained:
“The night before, I was afraid to go to sleep. 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.”
Hence, it is of great importance to learn the signs of lupus.
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:
- Headaches
- Anemia
- Sun- or light-sensitivity
- Fever
- 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
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.”
Namely, numerous patients diagnosed with lupus have been diagnosed with “a second or third autoimmune disorder” during their lifetime.
Therefore, so if some of these diseases run in the family or if you are already diagnosed with some of these autoimmune diseases, it is a sign that you must be careful about the symptoms of lupus, as if you diagnose it early, you may avoid numerous complications later in life.
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.
Causes of lupus
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.
Treatment
Stothers suggests that “Lupus patients often live long, productive, and happy lives.” Yet, in order to control the condition and preserve their health, patients need to monitor the symptoms.Dixon explains that patients experience mild to severe flare-ups.
“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.”
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