Meet Our Lupus Warriors

As part of our lupus awareness month we shall share some of our stories of HOPE.

Meet Baaba, Our warrior.

My journey started in 2010 on the University of Cape Coast campus when I was in my final year, few weeks to start my end of first semester exams. It started with Malaria symptoms, joint pains and swellings of the feet, wrists and elbows. I went to the hospital and was given malaria treatment and ointment for the swells. After some few days there was no improvement but rather got worse so I reported back to the hospital where I was made to run some lab tests. The results couldn’t show anything wrong so I was just given pain killers and discharged.

I endured the pain to write my exams although it wasn’t easy with the extreme fatigue and constant headaches. On completing my exams my mum came to pack my stuff and sent me to Takoradi where we lived.

Each day of my stay home was hospital visits and appointments with different doctors and numerous lab tests. After several months there was still no diagnosis and the situation was not getting any better. My dad advised us to try herbal medication where we visited about three different herbal hospitals and also spiritual centres but all to no avail.

School reopened after some months but I couldn’t go because I was not any better. I was advised by my parents to defer my program for the next year but that was the last thing I wanted to do so I didn’t agree to it but decided to fight hard and try and complete my final semester with my colleagues. I pleaded with them and convinced them to take me to campus to register and bring me back home which they agreed. I didn’t want to communicate with my friends and colleagues because I felt very bad about myself anytime I tried to. I just kept contact with one close friend who was not even a course mate from whom I could get much information because I could trust her and she understood me.

During this period I was being taken from one Prophet to another to seek spiritual help since all the hospitals and herbal centres didn’t help. When it was time for exams I was taken to school to write the exams although I couldn’t study for exams and didn’t know what was covered and my colleagues also thinking I had deferred my programme. I sat for the exams and passed my exams by the grace of God with the little efforts I put in and was able to graduate with my mates.

After graduation in 2012, my sister decided to bring me to Accra to seek medical attention since she believed there would be a positive result trying in Accra. She took me to Nyaho Clinic where I was made to do series of tests again and the only thing noticed was blood and protein in my urine which was subject to further investigation. A different set of tests was done but nothing was noticed so I was referred to a Physician Specialist in the same hospital and on the very first appointment was diagnosed with Rheumatoid Arthritis based on the symptoms presented but I was asked to run some tests for confirmation, and when the results were ready after two weeks my diagnosis was confirmed to be Systemic Lupus.

I felt a little relieved when my diagnosis was confirmed because at least I knew what was wrong with me. But upon hearing Lupus had no cure but can just be managed I felt shattered, I felt there was no hope. The doctor explained and after reading about it I decided to have hope, stay positive and fight on for my life. The doctor told me there was a special clinic at Korle-Bu for SLE patients so I was referred to Korle-Bu where I met Dr. Dey and Rheusolute family and they made me feel having Lupus was just not the end but there was so much to live for.

I am so happy getting into contact with the Rheusolute team because they make me feel at home and they are always ready to listen and advice.

Living with Lupus has made me adapt a lot of life style changes; you always have to get a backup plan since plans can change at any time. I had to learn to know myself better, engage in less stressful activities, eat healthy and take one step at a time. Be positive at all times and keep people with positive mindset around you.

The journey with Lupus hasn’t been an easy one. Waking up every morning with pains all over and extreme fatigue, taking dozens of medications on daily basis is not easy to deal with. But accepting that this is what I have to deal with, and working towards remission makes it easier to carry it out with less stress.

Lupus can be life threatening especially when there is an organ involvement. In my case my two kidneys have been destroyed by Lupus and I’m now living on my kidney reserves and will be depending on a machine soon, as I prepare for a kidney transplant.

It’s not an easy task waking up every morning and thinking of how to raise over USD50,000 in few months for a kidney transplant but I believe there is still hope despite all I am going through and I’ve been through.

I still fight on and will continue to fight on. Even at this stage I still go about my normal activities, go to work on daily basis, carry out all duties expected of me and live my life as anybody else. Am sure if I don’t tell you about my condition you wouldn’t know.

Lupus didn’t cause any change of career plans but affected my timing, and I believe everything happens for a reason. I’m currently a final year MBA student studying finance and a Banker as well, hoping to study Law soon after my graduation.

I will not allow lupus to destroy my plans but will continue to fight hard and pursue my dreams. With God by my side and my family especially my sister being my pillar of strength, I know I will make it.

I’m very grateful for the family support emotionally and financially. They were always ready to provide me with every kind of support I have needed from onset and this is what has kept me till date.

I’m not giving way for Lupus to define my life, I will make it and I am making it.