Melissa Ostroff-Volunteer Patient Advocate
May is Lupus Awareness Month. So, what is Lupus? It is an autoimmune disease that affects approximately 1.5 million Americans, and of those individuals diagnosed with lupus, 90% are women. Eighty percent of people develop Lupus between 15 and 45 years of age, and Lupus is two to three times more prevalent among people of color. It takes nearly 6 years for people with Lupus to be diagnosed from the time they first notice their symptoms.
Lupus can impact any organ or tissue: from the skin or joints, to the heart or kidneys. Two leading causes of serious illness and death are kidney disease and heart disease.
No two cases of Lupus are alike. The common symptoms include joint pain, butterfly rash across the creeks and the nose, and overwhelming fatigue and fevers. Sometimes these symptoms can last for days or even weeks. A common feeling among Lupus sufferers is that they feel like they have the flu all the time.
Most people with Lupus don’t look sick, and that is a misconception. “If people could see what I battle everyday, that would be wonderful, but they don’t. People can’t see joint pain, they can’t see headaches, they can’t see stomach pain. The fatigue overwhelms you to the point that a lot of people believe that you are just plain lazy. Remember, words hurt and depression can be just as devastating as any other disease.” So when you see a person with Lupus, don’t say, “You don’t look sick.”
How can you as a friend or a family member help someone with Lupus?
First, understand about the disease because it is an ongoing disease with no known cause and no known cure; Also, educate yourself on the symptoms of the disease. Secondly, be aware of how lupus is affecting your loved one (physically and emotionally), and pay attention to changes in symptoms or physical conditions that may suggest a flare. Third, be open to change living with lupus usually requires certain lifestyle adjustments. Lastly, be emotionally considerate to feelings of sadness, helplessness, and uncertainties about the future. These are a normal part of living with chronic illness.
Creating a care file is an aid in effective communication with health professionals as well as family member and friends.
It provides doctors and other health care providers with contact information as well as doctor visits and changes in treatment. In addition, the names of medications, dosages, and any special precautions as well as your emergency contacts are also provided. It should also include personal information such as date of birth, identification, and insurance information.
Remember, everyone deserves to feel supported in what pains and sickens them, visible or not.
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