Each year during the month of May, The Lupus Foundation of America recognizes Lupus Awareness Month and curates a campaign that provides critical resources to raise awareness about lupus. Lupus Awareness Month is like other health awareness month campaigns in which its goal is to educate individuals and help spread the word about a specific disease. The more we can do to learn about our bodies and our health, the better we will be able to take care of ourselves. During Lupus Awareness Month, we encourage individuals to learn about lupus and the physical, emotional, and economic impact that it has on people and the communities they live in.  

This year’s theme for Lupus Awareness Month is “Let’s Make Lupus Visible”. Often known as the invisible disease, this year’s campaign aims to flip the script and focuses on raising awareness and bringing attention to lupus and its symptoms, while also addressing common misconceptions about the disease. To assist with the campaign and to help spread the word and educate the community about lupus, we spoke with Ashley Holden, M.Ed., CHES®, Health Education Manager, Access and Advocacy, from the Lupus Foundation of America, about lupus, common symptoms, navigating health insurance and treatment, and fertility. Continue reading below to learn more about our conversation with Ashley. 

What is lupus? 

Lupus is a chronic autoimmune disease that causes inflammation and pain in the body. Over time, this chronic inflammation can cause permanent organ damage in people with lupus. 

The most common form of lupus is systemic lupus erythematosus (SLE). Most people with lupus have SLE, which can affect any part of the body. There are other types of lupus that are limited to the skin or are caused by certain medications. There is also a complication of lupus that affects the kidneys called lupus nephritis. 

What are the common symptoms of lupus? How prevalent is it? 

The Lupus Foundation of America estimates that 1.5 million people in the U.S. have some form of lupus. Anyone can develop lupus, but it is most commonly diagnosed in women between the ages of 15-44. Women who are members of racial and ethnic minority groups are at higher risk of developing the disease. Although only about 10% of people with lupus are men; they tend to have a more severe form of the disease.  

The signs and symptoms of lupus are the same for women, men, and nonbinary people. Common symptoms are extreme fatigue, pain or swelling in the joints, headaches and chest pain when breathing deeply. Almost everyone with lupus has some sort of skin involvement, which can take the form of rashes, sores, sensitivity to light or hair loss. 

Because lupus affects people in different ways, not everyone will experience the same symptoms. 

Can you share more about receiving a diagnosis and what treatment looks like? 

Diagnosing lupus can be difficult. There’s no one test that can give a clear “yes” or “no,” which means it can take years or months to get an answer. To determine if someone has lupus, doctors will usually begin with a detailed health history and family history, including asking about the duration and severity of symptoms. They may also ask for blood tests, urine tests, and biopsies.  

If you suspect you might have lupus, tracking your symptoms and bringing that information to your next doctor’s appointment is a good place to start. 

What are some common myths around lupus? 

One of the many myths around lupus is that the disease can only happen in women, but as noted above, anyone can get lupus. 

Lupus is not contagious and it’s not a form of cancer or HIV. Lupus is an autoimmune disease that occurs when the immune system begins attacking the body it is supposed to protect. No one knows exactly what causes lupus, a person’s genetics and environment likely play a role in developing the disease.  

Some claim that there is a specific diet that can cure lupus – this is not the case. Healthy eating habits help improve the way you feel and work to reduce or prevent other comorbidities like high blood pressure and diabetes, but there is no “lupus diet” that will cure the disease. 

How can having health insurance aid in the treatment of someone’s lupus? 

It’s important for people with lupus to have regular medical appointments including routine laboratory tests and follow their treatment plan as prescribed by their health care provider. 

People with health insurance usually find it easier to see their care providers and access specialists such as a rheumatologist due to the large network of providers that work with health insurers.  And in many cases, health insurance can lower the cost that someone must pay for these types of visits or services. While treatment costs can vary based on the prescribed medication, health insurance should allow the person to obtain the medication at a lower cost.  

Overall, health insurance helps to reduce medical costs, making health care more affordable and more accessible. Access to care supports positive health outcomes and can reduce financial strain on an individual and/or family. When health care is more affordable, it tends to be more accessible and easy to use.  

How does lupus affect fertility and the ability to have a healthy pregnancy? 

People with lupus can become parents and have healthy pregnancies; it just takes some planning. While lupus itself doesn’t affect fertility, some lupus medications can affect fertility or cause birth defects. Lupus also increases the risk of certain pregnancy complications such as high blood pressure, kidney issues and blood clots. 

Both men and women with lupus should work with their doctors at least 3 to 6 months before starting a family to make sure they are in the best possible position for a healthy pregnancy.  

If you’re not ready to have children, it’s important to use birth control to prevent an unplanned pregnancy. By working with their doctors, everyone with lupus can find a safe, effective form of birth control that is right for their situation.  

Anything else you’d like to touch on? 

While there is no cure for lupus, there are treatments available. Most people with lupus are able to control their disease with medications and lifestyle changes and achieve a high quality of life. Learning as much as you can about the disease and developing disease self-management skills can help. The Lupus Foundation of America has a number of resources for people with lupus and caregivers with lupus. We invite everyone to reach out to our Health Education Specialists who can help answer your questions about lupus. There’s also a wealth of information through several free programs we offer: 

1. Webinars called Lupus & You, an educational series where you can learn more about the latest lupus research and disease management. 
2. Interviews with lupus experts through our podcast called The Expert Series. 
3. We also have a free online program called SELF, which can help you gain skills to manage symptoms, stress, medication and improve your communication with your health care team.

Stay on top of your medical appointments by scheduling your annual physical with your primary care physician. Need health insurance? HealthCare Access Maryland can help! Learn more here.