For many, lupus seems almost like a dream they’ll never experience.
To 1.5 million Americans, the disease is very real and affects their everyday life.
Unfortunately, the autoimmune disease has no known cure, but many treatments are available to manage symptoms and outbreaks.
9 out of ten people affected by the condition are women and symptoms typically begin between the ages of 15-45 (1).
What Is Lupus?
Lupus is an autoimmune disease, which means that the immune system mistakes the body’s own tissues as foreign invaders and attacks them (2).
The disease is typically determined by genetic, hormonal, environmental, and immune system factors although drugs and hormonal imbalance can play a role as well (3).
The two most common varieties of the disease are discoid lupus erythematosus (DLE), which affects skin exposed to sunlight, while systemic lupus erythematosus (SLE) affect skin and internal organs.
Systemic lupus is a very serious condition which can affect the connective tissue in the joints, muscles, and skin, ass well as the membranes surrounding or within the lungs, heart, kidneys, and brain. It’s also known to cause kidney disease and possible brain damage.
Because the condition has no cure, patients must manage their condition by treating symptoms and avoiding triggers (4).
Common triggers include sunlight, infection and some medication. Although stress , extreme temperature changes and inflammatory foods can aggravate the condition. However, drugs are also used in the treatment of the condition. In fact, anti-inflammatory drugs, immune suppressants and chemotherapy are typically used to control the condition (5).
Sufferers are often followed by a rheumatologist, cardiologist, nephrologist, neurologist and gastroenterologist to control organ damage. They may also be prescribed medication to manage complications, such as diuretics, antihypertensive drugs, anticonvulsants, antibiotics and bone-strengthening drugs (6).
Common complications include:
- Rheumatoid arthritis
- Reactive arthritis
- Celiac disease
- Pernicious anemia
- Inflammatory bowel diseases
- Hashimoto’s disease
- Addison’s disease
- Graves’ disease
- Sjögren’s syndrome
- Type 1 diabetes
- Other immune disorders
What Is Like To Live With Lupus?
“It’s a disability that you cannot describe because the whole thing about lupus is it’s so unpredictable,” explained Mallory Dixon, 29, to Medical Daily (8).
The worst part of the disease is that it varies from person to person, meaning that your doctor must observe your condition extensively to learn how to adapt treatment to your specific needs.
Many lupus sufferers go through multiple failed diagnoses before discovering their condition as the symptoms often mimic those of other diseases. In Dixon’s case, her doctors identified rheumatoid arthritis when she was 17 years old but could not understand or manage her other symptoms for years.
Eventually,her doctor began to believe her condition to be more psychological than physical. “One of my doctors told my parent I might need to see a therapist,” she said.
Six years after her arthritis diagnosis , she was finally diagnosed with lupus. Despite finally getting the diagnosis right, Dixon ended up being resuscitated after finding herself medically dead only two years later.
Her hospital stay ended up lasting 86 days as she suffered from a coma, lost the ability to breathe on her own received chemotherapy, and was treated with dialysis. Her lupus had began to affect her kidneys, causing permanent damage.
And while Dixon continues to suffer form the effects of her condition, she hopes to educate women about the condition in hope that they may recognize their symptoms and take control of their disease. In doing so, she aims to help give women early access to medical help to minimize organ damage.
“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.
Many lupus patients don’t get the emotional and medical support they need in the early stages of their disease. “Some people look completely normal yet they feel awful,” said Stothers, a registered nurse, “doing the smallest task is impossible.” It can be incredibly isolating ,as most patients don’t exhibit obvious symptoms and sometimes aren’t believed by their family or even their doctor.
In some cases, it can be very difficult to diagnose because the patient doesn’t fit the cookie-cutter causes. “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.”
Signs That You May Be Affected By The Condition
If you have a family history of lupus or if you experience a multitude of medical conditions, keep an eye out for the following symptoms (9):
- Pain or swelling in joints
- Muscle pain
- Fever with no known cause
- Red rashes, most often on the face
- Chest pain when taking a deep breath
- Hair loss
- Pale or purple fingers or toes
- Sensitivity to the sun
- Swelling in legs or around eyes
- Mouth ulcers
- Swollen glands
- Feeling very tired
- Anemia (a decrease in red blood cells)
- Dizzy spells
- Feeling sad