Life with lupus: “Your body destroys you from the inside out”’

Wednesday April 27 2016

By ABIGAIL ARUNGA
More by this Author

I first met Juliet at a Storymoja function where she was, as she was wont to be, making a lot of noise and generally being a life-loving ball of energy.

I didn’t know she had lupus, and at the time, neither did she.

Last year, though, it got really bad and now she has been out of commission for eight months. Her savings have been depleted, as have her family’s – many of whom don’t even know what exactly is wrong with dear Juliet, because so few people talk about lupus.

Most people don’t know anyone who has it, unless you count the rare individuals who make it a public campaign, using their star power for the good of knowledge

Perhaps this is because there are considerably fewer people living with lupus than there are with other autoimmune or terminal illnesses, such as HIV, or cancer.

About 200,000 people in Kenya have lupus, according Dr Etau Ekwuom, the rheumatologist who spoke to us at #SheBlossoms last Saturday.

We were at the Family Fun Day organised by friends and well-wishers of the movement, who know Juliet, at Pawa254. There were quite a few people present at the fun day, but not enough for such a daunting cause.

'SELF-MEDICATING'

Just to be clear, lupus is an autoimmune disease that attacks your healthy cells. Basically, your body’s defence against disease thinks you are the disease and starts tearing away at everything – your bad cells, your good organs, everything.

Your body destroys you from the inside out, which is why so many lupus warriors, much like HIV-positive people, are susceptible to many other infections, and live lives often consumed with unbearable pain.

This also results in a loss of livelihood of course – no one can work in intense pain – and the uncertainty of when lupus strikes translates to a lack of consistency at work.

Juliet told us about the day she realised that things had come to a head. She was at another Storymoja function where she got incredibly mad at someone, then burst into tears, then felt too faint to continue arguing. Her lupus affects her pituitary gland which puts her hormones out of whack.

Though testing for lupus is not particularly comprehensive, and the disease can be misdiagnosed because it has symptoms that most people brush off such as muscle aches that can be cured with Panadol, there is a checklist of about 18 signs and symptoms that a trained doctor should be able to look for and immediately identify.

Juliet herself was often self-medicating – which is dangerous for most ailments, as any doctor will tell you – and so the painkillers helped her ignore the pain until she could ignore it no more.

The problem is, there are only eight qualified rheumatologists in Kenya. You can imagine how much it costs to manage lupus as it cannot be cured or even just to figure out that you have it.

DEARTH OF DOCTORS

Many at the fun day had no idea what lupus is – much less fibromyalgia, a chronic disorder characterised by intense muscle pain, which another panellist, Julie Muriuki, suffers through. Fibromyalgia, like lupus, does not have a cure.

In fact, because fibromyalgia makes sufferers incredibly sensitive to any form of pain, Julie had to go to South Africa to even be able to go through the beautiful process of bearing a child.

All hope is not lost. Julie and Juliet are pushing through this pain – Julie has two wonderful children, and Juliet has managed to find a home for her talents that will not require her to move too much and understand when she is too exhausted to work.

Kenyans have started talking about it. The Lupus Foundation of Kenya, led by Wewo Kitawa and More Arwings Kodhek, seeks to offer emotional support and understanding for those infected and affected by lupus.

It isn’t a disease that many understand or can easily find support for, and so the foundation is at the forefront of educating the masses and holding the hands of lupus warriors by running medical camps as well as helping lupus patients get to doctors who can see them at subsidised rates.

The fun day opened the eyes of those present, including myself, and started an important conversation.

More doctors are training abroad as rheumatologists and coming back to fight this, so that patients are able to get treatment. On top of that, more doctors here are able to identify what is going on inside faster.

May is Lupus Awareness Month. What will you be talking about?