Lupus or SLE is short for systemic lupus erythematosus, a chronic autoimmune disease in which, your immune system fights your healthy body cells! The result is, literally every part of your body, from your skin, your kidneys, heart, lungs, etc are affected. Seal, the Grammy Award winning singer and song writer suffered from discoid lupus, a type that affects the skin, which left his face scarred. Nick Cannon, the AGT host experienced kidney failure due to complications from lupus. There is an estimated five million people in the world with some form of lupus. Despite this, not many governments have dedicated any meaningful relations towards funding lupus. The month of May is dedicated towards raising awareness about lupus.
Once a person is diagnosed with lupus, there is never being free of it. Your life is characterized by periods of flares and remissions during which the symptoms wax and wane. During a flare, your life takes a back seat as the auto antibodies wreck a havoc in your body. Remissions is the time when you take your drugs and suffer the side effects of those drugs, live your life and wait for a flare because it is always coming!
Aside from the physical manifestations of the disease, lupus, like all other chronic illnesses will affect your life financially, socially, and emotionally.
Lupus is an expensive affair! Apart from having to buy drugs that cost an arm and a leg and doing a zillion tests, you also have to pay doctor’s consultation fees on a monthly or two monthly basis. Then there is the cost of moving from home to hospital and numerous other miscellaneous expenditures that don’t apply to persons who are well enough. It is important for me to mention that as much as we encourage all persons to take a medical cover, most people with lupus have to pay for drugs out of pocket because most regular pharmacies and hospitals do not stock these drugs.
Most people are diagnosed with lupus at the prime of their lives; late teenage to twenties, while they are busy trying to be alive and wrapping their minds around the fact that they will be sick for life, their colleagues are making a nark for themselves in the career world! The result is, they give up on their dreams, become under- employed or unemployed. For those who are diagnosed later in life when they are gainfully employed, they may not be able to stay employed because of being constantly absent. Though there are laws that protect employees, some employers will retrench, or sack you at the slightest provocation!
Chronic illnesses always have their effect on marriages and family life. Those that come early in life have a way of separating the sick from their soul mates and lupus is no difference. Love may be strong but not stronger than the constant fear of losing a loved one. One of the consequences of lupus is habitual pregnancy loss and this in itself worsens the already bad situation.
People with lupus may have less friends because they are almost always missing in action. Today they are okay but tomorrow morning they are too tired they can’t move a finger to scratch their scalp! And so they have to cancel a dinner on the eleventh hour and some friends can’t understand that! They miss a baby shower because they convulsed at night and they don’t want to ruin it by convulsing right in the middle of the photo shoot, and also baby showers remind them of their own babies who came out as clotted blood.
Being constantly sick, relying on meds for life, the strain to get enough money for your illness, having very few people who understand your sickness and the lupus itself have an adverse effect on mood. It is therefore uncommon for people with lupus to suffer from mood disorders such as depression! Caregivers and primary doctors should therefore be able to screen for any signs of depression and refer these patients to psychiatrists on time.
It is now possible for people with chronic illnesses like HIV and TB to get drugs at no cost. People with lupus should also be able to get their drugs and tests for free or at a subsided cost. This will go a long way into improving their survival rates and quality of life, because with the proper treatment they can be productive people who will contribute immensely to the growth of this nation. If you see Nick Cannon hosting AGT, you wouldn’t think that he has lupus; a chronic illness that can be debilitating at times.