Lupus is an autoimmune disease that causes inflammation of the body. The most common form of lupus is systemic lupus erythematous (SLE). Lupus can cause damage to the circulatory system, increasing blood pressure. This increase in blood pressure can result in the development of a type of pulmonary hypertension called pulmonary arterial hypertension (PAH). PAH is a disease in which blood is not able to circulate normally in the lungs due to the narrowing of the arteries. This results in increased blood pressure in the lungs, causing the heart to work harder to pump blood into the lungs. It is estimated that up to 5% of people with SLE will develop PAH.
Managing life with multiple rare diseases
The start of my PAH journey began when I was at my rheumatologist's office, and a student had done my assessment. I explained to him how I felt and told him about a recent test I had. He then felt the pulse on my neck and stated that I needed an echo before I fell through the cracks. It was 2001, and In August, I was diagnosed with Pulmonary Arterial Hypertension (PAH). It was devastating as a young family. We were now all living with the illness. It affected my ability to keep up with daily activities, and the future was uncertain.
Yet, I was no stranger to chronic illness. I had been diagnosed with Lupus in 1985. In 2011, I added autoimmune hepatitis to my list. It is not easy living with multiple conditions, and the work involved in managing all three can be overwhelming. I will be on medications and oxygen that are considered lifelong treatments. I have learned that educating myself and asking for help when needed are important.
Jas James, Living with PAH, Lupus and autoimmune hepatitis. Cobble Hill, BC
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