Whether it’s a purple shirt, hat, sunglasses or more, wear your favorite purple gear to help “Make Lupus Visible” – the campaign slogan offered up by The Lupus Foundation of America. This campaign challenges the lupus community to join together across the country to raise awareness of the physical, emotional and economic impact of lupus.
- It is estimated that 1.5 million Ameicans, and at least 5 million people worldwide, have some form of lupus
- 9 out of 10 adults with lupus are women and most develop the disease between ages 15-44
- People with lupus can experience significant symptoms, such as pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that affect every facet of their lives. Many suffer from cardiovascular disease, strokes, disfiguring rashes, and painful joints. For others, there may be no visible symptoms
There are 4 different forms of lupus:
- Systemic lupus accounts for approximately 70% of all cases of lupus and in approximately half of these cases, a major organ in the body, such as the heart, lungs, kidneys, or brain will be affected
- Cutaneous lupus (affecting only the skin) accounts for approximately 10% of all lupus cases
- Drug-induced lupus accounts for another 10% of all lupus cases and is caused by high doses of certain medications and resolves after stopping the medication
- Neonatal lupus is a rare condition in which a mother’s antibodies affect the fetus and, at birth, the baby may have a skin rash, liver problems, or low blood cell counts, but these symptoms typically disappear completely after six months with no lasting effects
Establishing a lupus diagnosis is not always easy as there are many challenges to reaching this diagnosis. Lupus is known as “the great imitator” because its symptoms mimic many other illnesses. Lupus symptoms can also be unclear, can come and go, and can change over time. On average, it takes nearly six years for people with lupus to be diagnosed, from the time they first notice their lupus symptoms.
In one survey, a majority of people (63%) with lupus surveyed report being incorrectly diagnosed. Of those reporting incorrect diagnosis, more than half of them (55%) reported seeing four or more different healthcare providers for their lupus symptoms before being accurately diagnosed.
Because lupus can affect so many different parts of the body, it can cause a lot of different symptoms and many people with lupus don’t have all the symptoms.
The most common lupus symptoms (which are the same for men and women) are:
- Extreme fatigue (feeling tired all the time)
- Pain or swelling in the joints
- Swelling in the hands, feet, or around the eyes
- Low fevers
- Sensitivity to sunlight or fluorescent light
- Chest pain when breathing deeply
Many people with lupus also have problems that affect their skin and hair, like:
- A butterfly-shaped rash on the cheeks and nose
- Hair loss
- Sores in the mouth or nose
- Fingers and toes turning white or blue and feeling numb when a person is cold or stressed (Raynaud’s Disease)
Treating lupus: a guide
If you’ve been diagnosed with lupus, treatment is probably one of your biggest concerns and treating lupus is a team effort. While there’s no cure for lupus right now, having the right treatment plan can help:
- Control your symptoms — like joint pain, swelling, and feeling tired
- Keep your immune system (the part of the body that fights off bacteria and viruses) from attacking your body
- Protect your organs from damage
Treating lupus can be difficult. It can take months — or even years — to find the right combination of treatment options . Your treatment plan may depend on things like your age, your lifestyle, and any other health conditions that you might have.
Your treatment team typically includes a rheumatologist who can help you find the right treatment plan and refer you to other doctors to treat specific symptoms.
Learn more: Lupus Foundation of America