Friday, May 10, 2013

May is Lupus Awareness Month!

May is Lupus Awareness Month, and today is World Lupus Day!

So what is lupus?

It is an autoimmune disease which can affect any organ system in the body. There are 4 types of lupus. SLE, or Systemic Lupus Erythematosis is the most serious form of lupus and it commonly attacks the heart, lungs, and kidneys. CLE, Cutaneous Lupus Erythematosis, is limited to the skin, causing rashes and lesions (sores). Unfortunately CLE can lead to SLE over time, and children (making up 5% of patients diagnosed) who develop lupus early in life are more likely to have serious complications. NLE, or Neonatal Lupus Erythematosis, affects the infant of a mother with lupus.  The mother’s antibodies can cause lupus symptoms in newborns which disappear after a few months. There is also DLE. Drug-induced lupus Erythematosis is a reaction to a few specific drugs by a small minority of people. Generally the symptoms of that lupus disappear after stopping the medication causing the issues.

How is Lupus related to Pulmonary Hypertension?

Well, lupus is significant cause of Secondary Pulmonary Hypertension.  Studies have shown that up to 60% of Lupus patients develop some kind of pulmonary involvement, including PAH. Related to scleroderma, lupus can also cause damage to the blood vessels of the lungs, leading to increased pressure.

Who can get lupus?

Anyone is capable of having lupus. It is not a contagious disease, so you cannot “get it” from someone. While 90% of the patients diagnosed with lupus are women, men are capable of developing the disease as well. It is most common for women to develop the disease from the ages of 15 to 45; however children may also develop lupus.  For men, diagnosis later in life is more common. African Americans, Hispanics, Asians, and Native Americans are most likely to develop the disease.

So what are the symptoms?

Since SLE can affect any organ system there are many different symptoms of lupus. The most identifying of these is the “butterfly” rash that gave lupus its name, because it looks like the “mask” of a wolf and lupus is the Latin name for wolf! Other common symptoms include extreme fatigue (we all know the effects of that!), headaches, painful and sometimes swollen joints (90% of patients experience joint or muscle pain), oral lesions or ulcers (the most common symptom with 95% of patients developing these), fever, hair loss, and sun sensitivity. As the disease progresses, more organs are likely to be involved. While up to 40% of all patients will develop renal complications, over 50% of children diagnosed with develop renal disease, and this is thought to be caused by the long duration of the disease.

How is lupus diagnosed?

Because there are so many different combinations of symptoms, and those symptoms are common in many diseases, it is often very difficult to diagnose a patient as having lupus. Like patients with PH it can take 5 or more years to diagnose each case! There are several laboratory tests that are given and analyzed along with the patient’s entire medical history in order to rule out other possibilities. As with PH, doctors are taught to look for the horse first, seeing the zebra after much testing!

Will the children of lupus patient develop lupus as well?

You might think that since lupus is genetic in nature that it would be hereditary. That is not the case. Only about 5% of children with one or more parent living with lupus will develop lupus as well. Unfortunately for those children there are no genetic tests available for early diagnosis.

  How is lupus treated?

Like PH patients, those diagnosed with lupus must see a specialist, a Rheumatologist. The involvement of other organs may require the addition of other specialists, and the coordination of all doctors on the overall care of the patient. Many patients will take many medications often for the rest of their lives. There is no cure, and no treatment is guaranteed to work. It has been found in many cases that, while PH cannot be cured or treated with other medications, controlling the lupus will also keep the PH manageable. Drugs include steroid, anti-malarial, and immune-suppression drugs. Care and management of this disease can be very expensive, especially when a patient is no longer able to work or provide for themselves.

What kind of life can those living with lupus expect?

80-90% of patients diagnosed with SLE can expect to live a relatively normal life. There are many organizations out there to help all patients cope with the challenges presented in their life, including utensils to assist opening jars! To assist the patient with medical costs, many drug companies offer financial assistance. Many communities also offer help with housing and mobility.

Where can I get more information on lupus, or offer help to patients?

The Lupus Foundation ( is the lupus equivalent to PHA. My favorite patient support group online is But You Don’t Look Sick, the origin of “The Spoon Theory”. (



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