In raising awareness of this disease, I think we’re raising awareness of all autoimmune diseases. Too many of them are ‘orphan diseases;’ diseases that the general public has heard of, but when it comes to donation for research, the money goes to heart disease or cancer research. That’s not because people want to see ‘lupies’ suffer, it’s because they are more aware of the challenges faced by those with diabetes or heart disease. Let’s change that!
An estimated 1.5 million Americans have a form of lupus, a chronic, severe autoimmune disease for which there is no cure. Every day these patients must deal with their own immune systems turning against their bodies, resulting in health effects including heart attacks, strokes, seizures, organ failure, and miscarriages.
Yet, while many people are impacted by lupus, greater awareness of the disease is needed. Because symptoms such as fatigue, skin rashes, joint pain, and hair loss mimic other conditions and appear differently in different people, lupus is very difficult to diagnose. More than half of people with lupus visit three or more doctors to find a cure for their symptoms, and experience symptoms four or more years before finally being diagnosed.
That was the case for Karon Beasley, who saw six different types of doctors over four years before visiting an allergist who suspected she had an autoimmune disease.
“I was coming home from working out one day when the feeling of fatigue hit me. It was overwhelming – I’d get tired just walking to my mailbox,” said Beasley, who suffered through a variety of misdiagnoses including, anemia, thyroid disorders, and PMS before it was determined that she had lupus.
“I couldn’t get answers and went in circles. A dermatologist told me, ‘honey, that’s just hormones,’ and prescribed me a cream. I went to a neuropsychologist to treat my depression, because you start to think something is mentally wrong with you,” she said.
Many people do not suspect they have a potentially disabling and life-threatening disease because lupus symptoms tend to come and go, and different symptoms may appear at different times during the course of the disease. Nine out of 10 people with lupus are female, and the disease develops most often between the ages of 15 and 44. African-American, Hispanic/Latino, Asian, and Native American women are two to three times more likely than Caucasian women to develop lupus.
Beasley, who has now lived with the disease for more than 12 years, encourages people with lupus to be their own advocate. Friends, family, and doctors should also be considerate of what it is like to live with lupus.
Beasley says, “most people with lupus at some point hear: ‘but you don’t look sick.’ We face the issue of dealing with an invisible illness. You have to know you don’t feel well and recognize that you need to talk to another doctor and keep going. Doctors’ appointments can be consuming unless you are prepared and can communicate what is going on with your body. They only know what you tell them, so when you know something is wrong, write down every symptom you have, even if you think it is not related.”
Beasley also advises patients to get educated about their disease through trusted organizations like the Lupus Foundation of America.Hits : 26