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.
The first diagnosis of Mallory was rheumatoid arthritis. However, after 6 years, she started experiencing many additional symptoms so she was diagnosed with lupus. Two years later, Mallory was in a terrible condition and was even unable to breathe, so she had to seek a proper medical care.
Mallory explains that the night before she went to hospital, she thought she will dying and was even afraid to fall asleep.
And in fact, she did die when she arrived at the hospital, but she was brought back to life by the doctors. During the 86 days she was attached to bed, she fell into a coma, was hooked-up to a ventilator, received chemo, and was treated with dialysis. Only later did the doctors discover that it was lupus which caused these symptoms, and that it was spread to her kidneys.
Her goal is to bring awareness to women about lupus symptoms, as lupus can be prevented from spreading to kidneys, brain, heart, and other organs if discovered on time.
Warning Signs of Lupus and Its Effect on Life
The national nurse health educator at the Lupus Foundation of America explains that the first symptom of lupus is debilitating fatigue. Here are the further lupus symptoms according to her:
- Mouth or nose ulcers
- Abnormal blood clotting
- Fingers turning blue or when cold
- A rash in the shape of butterfly across the nose and cheeks (in the past, this rash reminded doctors of a wolf’s bite which is why they gave the name “lupus,” which is “wolf” in Latin)
- Extreme tiredness
- Painful or swollen joints
- Pain in chest when taking deep breaths
- Swelling in the hands, legs, feet, and/or around eyes
- Hair loss
- Light- or sun-sensitivity
Stothers adds that although some might look normal, they can have huge problems doing even the smallest tasks. These people can feel terrible and other could say that they look perfectly fine. That’s why lupus is often an isolating disease.
Lupus is often mistaken with autoimmune and hormonal disorders, because its symptoms mimic those of heart, bone, muscle, or lung disease, as well as Lyme disease, rheumatoid arthritis, fibromyalgia, diabetes, and blood disorders.
Mallory says that the only disease that runs in her family is the autoimmune disease psoriasis. And this is the important part. Since many sufferers of lupus are misdiagnosed with another autoimmune disease, if you are have family history or you’re diagnosed with any of these diseases, you should be careful. In this way you can prevent a dramatic flare-up.
The most common autoimmune diseases are inflammatory bowel diseases, type 1 Diabetes, Addison`s disease, rheumatoid arthritis, reactive arthritis, Hashimoto`s disease, vitiligo, Graves’ disease, celiac disease, scleroderma, and Sjögren’s syndrome.
Stothers explains that although lupus has a genetic component, this doesn’t mean that one will develop the disease. Hormones, especially estrogen, and environment have important role too.
According to Stothers, lupus is generally diagnosed during the most fertile period of women, between the ages of 15 and 44. She adds that the hormones are in flux during pregnancy and after giving birth, so many women are diagnosed in these periods of their life. Nevertheless, she had patients with lupus diagnosed between the ages of 70 and 80.
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.