MULTIPLE SCLEROSIS PART 1

Gloria* is a 28-year old professional whom I have been acquainted with for a few years. She is the bold, sassy type of girl with a strong sense of style and a love for life and adventure. She works very hard in the office and still finds time to juggle career advancement in the middle of it all, going to school part time to do her masters.

This is the only image of Gloria that I have always known. You can therefore imagine my huge shock when one day she casually mentions that she suffers from multiple sclerosis. It took me a while to wrap my head around this.

I may be a doctor but I am not a physician. In my entire training, throughout internship and short stint as a general practitioner, the only time I came into contact with a multiple sclerosis patient was in my elective term in the United States. I formed the impression that multiple sclerosis was a condition afflicting people of Caucasian descent. I bet I am not alone in this!

Gloria changed my opinion pretty fast, telling me about her struggle with MS, as it is commonly referred to by most people. She opened my mind to the perspectives of what the Kenyan patients go through. I was amazed to discover that they even have a multiple sclerosis society that brings them together to support each other.

Multiple sclerosis affects every facet of one’s life. Commonly diagnosed in the twenties for most people, it is shattering to have your doctor look you in the eye and tell you that you have MS just when your life is beginning as a young adult. And then he caps it all by telling you that currently it has no cure!

This month, we mark World Multiple Sclerosis Day on May 30^th. As we count down to the event that is likely to be marked quietly without much ceremony, let us walk the road together with those suffering from multiple sclerosis.

Auto-immune diseases, of which multiple sclerosis is one, are probably the most controversial of all. We assume that the best thing to happen to us is to have a healthy immune system to fight disease and keep us healthy. We invest tons of money as a country to boost a good immune system for our children by ensuring we vaccinate them early in life. And then the greatest irony happens, that in our midst, there are those who will suffer from the opposite. Those whom their immune system is overly active, it turns around and attacks the very body housing it.

There are several auto-immune diseases, affecting various body systems and organs. Whenever we hear Lorna Irungu’s name, we remember her struggle with systemic lupus erythromatosus (SLE) which she has battled with for years, leading up to three kidney transplants. We all probably know of someone struggling with rheumatoid arthritis. We may not be aware of conditions such as myasthenia gravis that causes those suffering from it to look sleepy all the time; or scleroderma which destroys the elasticity o the skin, causing the patient to have scarred skin and look older than they are; or childhood diabetes where the insulin-producing cells in the pancreas are under attack.

In multiple sclerosis, the system under attack is the nervous system. The nerves of the brain and the spinal cord are covered by a protective sheath known as myelin; much like electric cables are covered with insulating material. In MS, the body’s immune system attacks and destroys this sheath and the end result is much like tampering with electric cables supplying your house. You will surely end up with a short circuit that may result in damage of your electrical appliances, leaving you in the dark.

This is the life of a multiple sclerosis patient. Gloria very well understands what it means to get home from class with an assignment due for presentation in three days and when her alarm rings at four o’clock in the morning, she realizes her hand cannot reach the clock to turn off the irritating noise. She knows she is headed to the ward for a while and she is unable to predict when she will be back to normal. It could be days, weeks or even months.

The unpredictability of the condition is probably the worst bit of it all. The disease is characterized by repeated attacks when the system short circuits and organs are rendered functionless because they are all powered by these nerves. Transmissions from the brain are distorted along the way and suddenly, muscles refuse to coordinate to achieve simple tasks like grasping, walking and even holding a spoon. Muscle spasms and cramping, pain, visual impairment, constipation, difficulty swallowing, slurred speech, mood swings and anxiety may all descend on the patient without warning.

Not only will these attacks keep recurring, overall, the condition progressively worsens with age. The good news is that the disease does not reduce life expectancy by much. The bad news is that the older one gets, the fewer the good days and the recovery from the attacks is less and less complete, leaving one with chronic symptoms.

I am still trying to figure out how Gloria does it, staying on top of things despite such dark moments in her life. It is therefore quite amusing when one sees the number of people around her who envy her apparent success and rich social life without the slightest idea of what she goes through when the nasty flares strike. She epitomizes the spirit in the words of Alex Clare: don’t let nothing hold you down! She’s probably shopping for a red dress to wear on May 30^th!