No one dies from lupus ~ some die from its complications.
Lupus is difficult to diagnose and even harder to treat. There is no single test that diagnoses this incurable, chronic disease.
Systemic Lupus Erythematosus is an incurable autoimmune disease, which holds the ability to debilitate and take lives as a result of attacking: healthy cells, tissues, various bodily systems, central nervous system, autonomic nervous system, blood, skin and vital organs – heart, brain, kidneys, lungs, and so forth.
It is not contagious, cancerous, nor is it rare. It is believed to be far more prevalent than AIDS, Sickle Cell Anemia, Cerebral Palsy, Multiple Sclerosis, and Cystic Fibrosis ~ combined.
Men, women, children, and the elderly can develop lupus – although, more women are more likely than men to become diagnosed with it. There are more lupus patients of color, rather than Caucasians, who have, and are more likely to get, the disease.
According to the Lupus Foundation of America, there are four recognized forms of lupus:
- Cutaneous Lupus Erythematosus
- Drug-induced Lupus Erythematosus
- Neonatal Lupus
- Systemic Lupus Erythematosus
Systemic lupus is the most common form of lupus, and is what most people mean when they refer to “lupus.” Systemic lupus can be mild or severe.
SLE Lupus can attack any system, tissue, or cell in the body.
Systemic lupus, which left untreated, can be life-threatening. Its symptoms are as widespread as the disease itself. One of the saddest realities of this disease is that it is usually not diagnosed until the patient becomes, temporarily or completely, debilitated or is in a life-threatening stage of the disease.
Symptoms vary from patient to patient and include – but are in no means limited to: debilitating joint pain and severe fatigue, as well as seizures and vital organ (kidneys, lungs, heart, and brain) malfunctions, memory problems (also known as lupus fog) and confusion, hardening of the arteries, hair loss, sore throats and fevers, butterfly rash across the bridge of the nose and cheeks.
An un-diagnosed patient may not show any symptoms, while the disease is working quietly behind the scenes attacking the blood by creating blood clots. These blood clots can occur in the anywhere in the body, including the lungs and brain.
This can result in a stroke, even death.
Lupus can be an extremely isolating and scary disease.
Just like any life-altering or life-threatening illness, the burden this puts on an individual, a marriage, and a family can be devastating.
It’s been said that many marriages end in divorce during the first year of a lupus patient getting a firm diagnosis, because the ramifications of the disease are so far-reaching. The symptoms, the financial burden, and the changes in lifestyle can sometimes be too much for a marriage to withstand.
Support and Awareness of Lupus
When a person gets cancer, devastating as it is, there is typically an outpouring of support from friends, family, co-workers, and even acquaintances. People know what cancer is; we understand AIDS and other wide-spread diseases. Lupus, while it does not secure a death sentence, it can take lives.
Information and support is easily obtained. Friends seem to come out from all directions offering to help. Doctors and researchers understand cancer, and as we most know – can cure some forms of cancer, if it’s caught in time.
Lupus, however, is extremely difficult to diagnose because its symptoms mimic less severe illnesses, and there are periods where symptoms aren’t present at all. For the most part, lupus patients look healthy – and as a result, they are typically branded as hypochondriacs.
Researchers now know that lupus patients have a genetic predisposition to getting it, but isolating the particular gene or genes and finding a way to stop it from developing into lupus still remains a mystery.
While most patients go an average of four years before getting a firm diagnosis, I was one of the fortunate few. I received a diagnosis within a month. For the prior 10 years, I had endured bothersome, painful, and often debilitating and undiagnosed symptoms.
The morning of New Year’s Eve 1997, I had my first seizure. It was one of hundreds to come. I saw a Neurologist soon after the New Year, and I now laugh at the recollection of his response, “a lot of women faint. You’re drinking too much water.”
(Years later, this doctor called and apologized for being so flippant and dismissive. He added that I helped him see how serious this disease is and that he would make strides to educate himself so he never made that mistake again.)
Shortly thereafter, I saw a newly-licensed doctor practicing at an emergency clinic. Apparently he’d paid close attention to autoimmune disease lectures during med school, because he took one look at me – my eyes, in particular, which were profusely inflamed (severe keratitis), and he ran the first of many tests, which led to a diagnosis of Systemic Lupus.
Getting a diagnosis is the first part of the battle.
Once a firm diagnosis is made, finding proper treatment can be an even more difficult task.
The year I was diagnosed, I fought tirelessly to get proper treatment. I underwent over 100 tests and saw 30 different specialists, including five different Rheumatologists ~ after I was diagnosed.
Entrusting my health to the then-most highly-regarded lupus specialist in the Greater Orlando area, I realized the magnitude of the battle that lay ahead. My weakness, fatigue, and pain throughout my body was nothing short of surreal. Exhibiting a host of classic lupus symptoms, such as blue fingers and toes, full-body lesions, hair loss, fever, along with nausea and dizziness that was nearly intolerable – and blood tests to confirm all, this healthcare professional retorted, “You’re frizzed out and there’s nothing I can do for you.”
It took months before I found proper treatment. At the hand-written suggestion via fax from Dr. Daniel J. Wallace, Chief Rheumatologist at Mount Cedar Sinai in Los Angeles, I made an emergency trip to Atlanta to see his colleague. Too ill to stand, I rested in a makeshift bed in the back of my SUV, while my former husband drove eight hours north to meet the second-ranked Rheumatologist in the country.
After recounting my plight with this Doctor, he was stunned at the ‘medical treatment’ I’d received to date. Dr. Rattandeep Singh, MD of Atlanta, Georgia saved my life.
Granted, I was not in the life-threatening stages of lupus any longer, but I was not living anything close to a functioning life. I was housebound, bedridden, or otherwise in a wheelchair the majority of the time.
Symptoms vary from patient to patient, day to day, week to week, month to month. One thing doctors, researchers, and patients agree upon is lupus that is unpredictable. Lupus patients count on its unpredictability, and they plan their days around it.
Just as symptoms vary from patient to patient, so do the treatments. They range from steroids and anti-malaria drugs, to kidney dialysis, chemotherapy and hospitalization for heart, lungs, and other vital organ involvement.
A dear friend who received a blow-by-blow account of my first two-year battle with lupus and saw for herself first-hand what I was dealing with: using a wheelchair, uncontrolled seizures and living with heart and lung complications, she still did not recognize how ill I felt – until I received a call a few weeks later.
She had been working at the University of Chicago’s hospital. On a routine basis she walked by a wing dedicated to treating patients with severe kidney malfunctions. She called me one night, nearly in tears, because she couldn’t believe the horrible pain these patients were in. Then she added, “Most of these patients have lupus. I had no idea it was this serious.”
Proper Research and Advocacy
The most sobering fact about lupus is, if we had proper research funds ~ no one would die from its complications. This does not need to be a fatal disease. Lupus patients and the doctors treating them need funds for cutting-edge lupus research – and that starts by raising awareness about it.
According to the Huffington Post, the FDA has just backed the first new lupus drug in 50 years.
“I think it’s very exciting that this is the first new drug in five decades, but it’s not magic bullet,” said Dr. Maria Suarez-Almazor of the MD Anderson Cancer Center in Houston
It is my sincere hope this article helps raise awareness, particularly for healthcare professionals who claim “no one dies from lupus.”
My first book of photography and quotes, “Perspectives: Words on Hope, Truth, and Integrity” is one of the many art forms I’ve sold over the years to help raise awareness and research funds for the Lupus Foundation of America and Howie Dorough’s Wings of Hope Lupus Foundation (a foundation formed after the loss of his sister, Caroline who died from lupus complications at age 38).