Let’s fly away…

May is Lupus awareness month and I wanted to bring about awareness because it hits close to home for me. Research shows that nearly 2/3 of the public knows little or nothing about lupus. An estimated 1.5 million Americans and 5 million people worldwide are living with lupus. 19 years ago, my twin sister was diagnosed with Systemic lupus. 18 years ago, I was diagnosed with the same disease. It has been a battle that fortunately we have been one step ahead of thus far. I’m not going to lie to you… my first thought when I was diagnosed was that I was going to die young. My sister and I had our little pity party, but lucky for us, we have a very supportive family who knocked some sense into us and our pity party came to a halt. Now, its more about what are we going to do about it? Lupus is an autoimmune disease which means your body attacks its own self. Lupus affects people in different ways, that is why it’s very hard to diagnose. The most common signs and symptoms include:

• Fatigue and fever
• Joint pain, stiffness and swelling
• Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
• Skin lesions that appear or worsen with sun exposure (photosensitivity)
• Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
• Shortness of breath
• Chest pain
• Dry eyes
• Headaches, confusion and memory loss

My sister and I had the classic butterfly rash, photosensitivity and joint pain when we were diagnosed. Luckily, we have some good medications to control lupus flares. I’d say for the past 16 years, I could have convinced myself that I really didn’t have lupus. However, things can’t last forever and I’ve noticed that every year that passes, it just gets a little harder to control the flares. Muscle and Joint pain and fatigue are the most common things that plague me and the fact that I have to be more aware of how much sun exposure I get can get me a little down sometimes. But because I have muscle pain and joint pain, I appreciate the simple joys of walking and running when its without pain. And I don’t take for granted the little things in life. People can live normal lives if they have lupus. I think the most important thing I could say to someone who is newly diagnosed with lupus is not to think of the “what ifs” but live for today. If you go down the road of “what ifs” its hard to find your way back.

Lupus occurs when your immune system attacks healthy tissue in your body. It’s likely that lupus results from a combination of your genetics and your environment. It appears that people with an inherited predisposition for lupus may develop the disease when they come into contact with something in the environment that can trigger lupus. The cause for lupus in most cases, however, is unknown. Some potential triggers include:

* sunlight

* stress

* medications

Lupus affects more women than men and usually occurs during childbearing years between 15 and 40 years of age.  Hispanics, Asians, and African Americans are more often affected by the disease.

According to the Mayo Clinic,

Inflammation caused by lupus can affect many areas of your body, including your:

Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and leg swelling (edema).

Brain and central nervous system. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, hallucinations, and even strokes or seizures. Many people with lupus experience memory problems and may have difficulty expressing their thoughts.

Blood and blood vessels. Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).

Lungs. Having lupus increases your chances of developing an inflammation of the chest cavity lining (pleurisy), which can make breathing painful. You may also be more susceptible to pneumonia.

Heart. Lupus can cause inflammation of your heart muscle, your arteries or heart membrane (pericarditis). The risk of cardiovascular disease and heart attacks increases greatly as well.

If you have lupus or know someone who does, there are resources out there to help.

lupus resources