Lupus is not arthritis
Mahlia Mahid was diagnosed with lupus at just 7 years old. As an African-American female, Mahlia was at higher risk for lupus and remains at higher risk for more severe health complications from the disease.
Mahlia’s first symptom was a rash on her face that slowly began to spread. No one could understand what was wrong with her. Doctors told Mahlia and her family that she had everything from scabies to psoriasis. At one point, Mahlia’s school asked her not to attend for fear that her mysterious illness was contagious.No child should have to feel like a pariah among her peers.
Lupus is an unpredictable, mysterious and misunderstood autoimmune disease affecting an estimated 1.5 million Americans. It strikes without warning and has no known cause or cure. People with the most severe symptoms can end up on chemotherapy for years. Others look healthy but suffer debilitating symptoms that forever alter their lives.
Lupus is difficult to diagnose and a challenge to treat. A majority of people with lupus report being incorrectly diagnosed, and many have to visit multiple doctors. It took six months and more than seven doctor visits before Mahlia was accurately diagnosed with lupus. On average, it takes nearly six years from the time they first notice their lupus symptoms to a diagnosis.
One challenge in diagnosing lupus is that the disease is too often mistaken for other illnesses or defined as just another form of arthritis.
This categorization is misleading and dangerous, especially to people living with the disease who might not fully understand their symptoms. Lupus can affect any organ system in the body, and because it is notoriously difficult to diagnose and symptoms may mimic other diseases, it is especially important to clearly define the disease to avoid patient confusion.
Without proper education, people suffering from lupus may downplay their symptoms, leading to prolonged wait times to see a physician during a flare-up and ultimately causing more severe organ damage.
We must do more to ensure that Americans understand lupus, its severity and its symptoms. Research shows that nearly two- thirds of the public knows little or nothing about lupus beyond the name. And despite the widespread prevalence of lupus, medical research has remained underfunded relative to its scope and devastation.
That is why, as co-chair of the Congressional Lupus Caucus, I am holding a “Lupus 101” briefing on May 7 to bring awareness to this cruel and mysterious disease. I hope you will all join me this Lupus Awareness Month and learn more about how you can help by speaking out and getting involved.
More research is needed to better understand this cruel and mysterious disease.
Without sufficient funding, research into the cause of lupus and the discovery of new treatments will be delayed. May is Lupus Awareness Month, and I am hopeful my colleagues and I can work together to fund scientific efforts to find the cause, better treatments, and ultimately a cure for this devastating disease, and that children like Mahlia can live a great life.
Johnson has represented Texas’s 30th Congressional District since 1993. She is ranking member on the Science, Space and Technology Committee, and sits on the Transportation Committee.