Minority Women at Higher Risk for Lupus than Others

Many fans were shocked when singer and actress Selena Gomez revealed to her followers that she has been battling lupus.  When Gomez made that declaration, she no longer was just one of the millions of people who have the disorder but rather, she became a spokesperson and advocate for many who have it.

Every year, thousands of people are diagnosed with lupus, an unpredictable autoimmune disease that can affect almost any organ in the body that also has an affinity for major organs like the liver and kidneys. The disease can also affect the skin, leaving deep scarring, as well as affecting memory in patients. Lupus, often referred to as a woman’s disease, is more common in women of childbearing age.  Men can and do develop lupus, but more often than not, they are diagnosed later on in life.  

One of the keys to successfully living with the chronic condition is early diagnosis.  Unfortunately though, lupus is a tricky and sneaky disease and is often misdiagnosed or not diagnosed at all.  On average it takes seeing two or three doctors and many months of blood tests, scans and filling out forms to get a proper diagnosis.  Lupus is also very easy to misdiagnosis because of the variety of symptoms that comes with it.  

Sufferers can complain of extreme fatigue, swollen joints, the appearance of a butterfly rash across the face, sensitivity to cold or hot temperatures, headaches, hair loss and fever. This is just a sampling of the large number of symptoms that are possible. A proper lupus diagnosis requires not only a positive blood test but evidence of active symptoms as well. Lupus, like many autoimmune diseases, can lie dormant for years, sometimes never flaring-up at all. This means that a person with lupus can be completely asymptomatic their entire lives.

Despite how common lupus is (as there are currently 1.5 million people in the United States with it), it’s not necessarily a well-known or talked about disease, until recently that is. Gomez’s recent revelations about having to undergo a kidney transplant as a result of dealing with a severe case of lupus has definitely increased the amount of ‘lupus talk’ in the media.  All it took was one tweet from Gomez to her fans to give lupus a face.

There are a few other celebrities out there, who are like Gomez, fighting daily against the disease. These celebrities include stars like comedian Nick Canon, recording artists Seal, Michael Jackson, Toni Braxton and baseball player Tim Raines. Because celebrities are now candidly talking about their disease, lupus and its effects are suddenly in the forefront of everything from celebrity magazines to medical journals.  Being the popular kid has its advantages though and lupus is being scrutinized now more than ever and as such, new revelations are being discovered.

What studies have found

Studies have found that ethnic minorities develop lupus at a higher rate than Caucasians. For example, a British study found that for every 1 in 750 Caucasian women with lupus rises to 1 in 250 Asian / Afro-Caribbeans with the disease.  On top of those facts, for every woman diagnosed with the disease there is an undiagnosed case floating around. This information is leading to the totally believable assumption that lupus might rank as one of the most prevalent diseases in the Asian population.

Aside from the fact that minorities do have higher numbers of lupus they also tend to have the more severe cases. In fact 10% of white women with lupus will see it progress to kidney failure, but for African American or Hispanic women those statistics climb to 20% to 40%. What’s even more sobering is the fact that minorities are more likely to die from lupus.

Lupus without treatment can be fatal which is why early detection or even detection at all is so critical.  Lupus is typically treated through a variety of methods based on the symptoms, the severity and other factors. Treatment can includes medications that can help with joint pain, reduction of swelling, and pain relief. In some more severe cases of lupus, rounds of chemotherapy are prescribed to help the patient deal with the effects.  

For minorities, access to these treatments is sometimes an impossibility. Medication can be very expensive and data shows that a high number of minorities lack the health insurance to cover the costs of treatment. This leaves a good chunk of lupus patients without treatment.

While scientists have a firm understanding that lupus does affect a higher number of minorities and that within that same group, lupus will develop earlier and will result in more severe cases and a higher number of deaths.  What they do not understand is why.  In fact regardless of race, scientists have not figured out what exactly causes Lupus.  There have been theories around viral infections that could potentially trigger the disease, as well as the thought that exposure to pollutants or radiation could be the culprit. However, no hard evidence has proven those theories to be valid.  What is evident however is that minority groups, particularly the women in those groups, are significantly more vulnerable to developing lupus.

Receiving a diagnosis of lupus is a lifelong sentence. Although at times, the disease may move into a dormant phase and not create symptoms at all, and at other times, patients will have to deal with flare-ups and begin battling some if not all of their symptoms. Lupus patients also have to deal with crushing fatigue and intense pain. All of these symptoms can make it hard to maintain employment and financial stability. This is especially true for minority women who live in at-risk communities.  

Proper care through physicians, rheumatologists or clinical immunologists can help lupus patients lead totally normal lives. But to do that, people need to know about lupus. It’s important that awareness about lupus continues, particularly in those at risk-communities with a large number of minorities who may not have access to many resources. 

The best way to spread any kind of information is through sharing stories and talking to one another. Community centers should provide information about lupus and its effects, as well as contact information for clinics and physicians who will provide testing for diagnosis and treatment. Local community medical clinics can offer support groups for Lupus patients and their families. As long as people continue to talk about lupus, who it affects, and the life changing side effects it causes, awareness will grow.  

Selena’s Gomez’s honesty about undergoing a kidney transplant because of lupus, and how she is coping with the disease has not only given lupus a face, a spokesperson and an advocate, but has also provided millions of people with a slightly better understanding of who is dealing with the disease and what they need to do to fight it. Lupus is now becoming a recognizable disorder and with that, hopefully more advocates will come forward to help fight against lupus.