Being ill under normal circumstances takes all you have to give. But what happens’ when you are diagnosed with a life threatening illness, and sacrificing all you’ve got and more hoping for a decent future! Full of rage and resilience, duty and love, “Ashley Bristow” delivers our voice like no other we’ve heard.

Growing up as a child you may not tell the difference, all you see is the similarity, companionship and compassion with each other playing and running around with no limitations, some would even play from dawn to dusk. Unfortunately, this was not the case with me; I had something that pulled me backwards, I found myself wallowing in absolute laziness not able to keep abreast with the rest of the children and often woke up disastrously late for School. This earned me a name tag, “the lazy one”.

At class two my teacher would have been weasel, his eyes were darting and furtive and you disbelieved him even before you opened your mouth, I was aware of his shortcoming and apparently this time he caught me into his radar and subjected me into “corporal” punishment by administering a few strokes of the cane to my already emaciated and small body for being caught sleeping in class.

Thereafter, I started developing lesions on my face, which were symmetrical on both chicks and forehead, they would at times bleed. My Mother took notice of these rear symptoms, and we started seeking primary medical attention in which I was given some ointments to apply on the affected areas. Unfortunately, the bleeding would still persist.

Showing no improvement, Dad took me to an Indian Doctor on Biashara Street who did a series of thorough blood tests and diagnosed me with a rare genetic disorder. He was Stunned and reeling, and called it “Lupus Nephritis” and he found little hope and a maze of obstacles, then he diagnoses me with systemic lupus erythematosus (SLE) in June 1986.

The Doctor referred me to a Nephrologist based at Kenyatta National Hospital. It is here, that, my Journey with Lupus began with Prof. Mc’ Ligeyo, who currently is a professor. Professor Mc’ Ligeyo, has been my nephrologist and Renal Doctor for years. Everyone has a right to life, but, when it is confronted with life threatening illness everything becomes gleam, especially when the Doctor thought that, I wouldn’t get to celebrate my 15^th birthday and that I was living on borrowed time but am still here and counting. God has a purpose for everyone and we should not at one moment write ourselves out. Special thanks to Prof. Mc’ Ligeyo for holding my hand and walking this endless journey with me, I truly owe him a lot.

As the saying goes,” One is only an illness away from bankruptcy” I have not been spared either, this has really been a very expensive disease to manage, sometimes being hammered with Medical bills from all sides, it is also irresistible to mention the physical and emotional effects that I have had to endure all this time, and occasionally throwing me into an oasis of silence at the thought of “Lupus”. One of the drugs I have been on for a long time is Prednisone-this has really saved my life.

I deliver my voice like no other.

 

 

Managing Lupus

Lupus is one of the most expensive condition to manage. It is very draining financially, emotionally and physically.

The drugs are very expensive to get, not forgetting the several visits one makes to the doctor and the tests ran each month.

There are foods which are not good for lupus. I check on my diet more and know what triggers my flares and that which I need to consume in moderation.

The sun rays are not friendly, always in a sunhat and this has really assisted me in managing it.

I avoid stressful environments and concentrate on the happy moments in my life.

There is so much I talk about but for now that’s my short story on living with an autoimmune condition.