Living With Lupus

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.

BEFORE YOU CONCEIVE

Get ready. You do not want to be that woman who “finds” herself pregnant eight weeks into the pregnancy when their doctor points out that the anti-malarial drugs did not in fact fail, that they had no malaria in the first place, and that their nausea and vomiting is here to stay until they are done with their first trimester. Before you get pregnant, do yourself and your unborn (or is it un-conceived?) child a favor, take time and get healthy. This is the crucial part you will play in ensuring you give birth to a healthy baby with no birth defects, at term.

Here are the things you need to do before embarking on the too serious, too important baby making process;

1. GET SCREENED FOR INFECTIONS

To have a healthy baby, you need to be healthy;

-Get your partner and yourself screened for infections such as HIV, hepatitis, rubella, HPV, and other sexually transmitted infections like gonorrhea.

-If any of this infection is found present, then it will be absolutely necessary to get treated before you conceive.

Mother to child transmission occurs with infections like HIV, while rubella is known to cause hearing and visual defects!

2. SUPPLEMENTATION

Folic acid –

There is a vivid picture ingrained in my memory of a young girl seated on a wheel-chair asking her mother, “why didn’t you take the damn folate!?”

Most women start their folate and iron supplements when they have been pregnant for a long while, others never start at all!

All intending mothers should start taking folic acid supplements 8-12 weeks before conception

Supplementation can be in the form of tablets available as over the counter drugs sold in pharmacies or in diet

Foods rich in folic acid are dried beans, peas, nuts, avocado, lentils, spinach, citrus fruits.( given a woman could become pregnant even by accident, all women should always make sure their plates are over-flowing with these food stuff.

Deficient folic acid leads to spina bifida and other neural tube defects

Women who have had children with spina-bifida, diabetic women, women taking anti-epileptic drugs and those with a BMI of 35 and above MUST take supplements of folic acid before getting pregnant to reduce chances o getting malformed babies.

Iron

Many pregnant women suffer anemia due to low iron levels. Anemia could be detrimental to both baby and mother and therefore should be prevented

Pre-conception, women should increase their iron in diet.

Sources- spinach, liver, egg-yolk, beans.

Where it is difficult to take it in food, then women should take supplement tablets

Vitamin

Other important vitamins should be supplemented like vitamins C, and B.

3. RISK REDUCTION

Chronically ill women require the approval of their doctors before becoming pregnant (ideally)

Diabetic, hypertensive, epileptic, HIV positive lupus, heart failure and other chronically ill patients should discuss with their physicians before becoming pregnant.

Such patient should discuss their drugs and their possible side- effects on their unborn babies.

They should discuss possible pregnancy outcomes, (women with lupus are likelier to suffer miscarriages,) the effect of pregnancy on their conditions (pregnancy will worsen heart failure) and the effect of their conditions on pregnancy.

Where necessary, their doctors will stop some o their drugs and re-introduce new ones, or will advise against getting pregnant if at all pregnancy will be too risky for the mother.

4. BLOOD GROUPING

Both the father and mother-to-be should have their blood grouped.

This allows detection of rhesus incompatible parents early, and a frame-work for intervention is drawn.

5. DRUGS

Smoking- intending mothers should quit first hand and second hand smoking if they intend to have children weighing any more than one kilogram (you do want a baby who is heavier than a kilo of sugar right?

Alcohol and other alcoholic drinks, wine included!

Alcohol consumption and pregnancy should not be mentioned in the same sentence (except how I did it there, hehe).

Alcohol has untoward effects to an un born child including but not limited to, an abnormal facial appearance, low intelligence, and behavior problems. You don’t want to do this to your child.

Quit even before you get pregnant, and have your partner quit in solidarity with you (this is just to reduce temptations, apparently, a drunk sperm doesn’t cause fetal, alcohol syndrome, a drunk other does)

6. OTHERS

Pregnancy is no easy feat, and you need to be prepared psychologically so you can puke gracefully, grow fat and not give a damn, and look at the stretch marks on your tummy and chuckle.

Prepare the finances, for some reason, pregnant women get sick more often, eat more, and need new clothes every month

All women need pre-conception care.