My Journey

The story of Rahila

My Lupus journey started sometime in 2019. Being a Regulatory Officer and an active field officer, I used to be so busy, never had a problem with Blood Pressure or any such thing. 

Around August 2019, we had a street campaign against the use of calcium carbide in the ripening of fruit and after that we all retired to our offices. While driving back to the office I had a light headed feeling but I just assumed it was the sun. 

On getting home I took hubby to the Hospital to see a doctor and decided to check my BP though I had just had my quarterly checks the previous week. But to my shock my BP was high at 170/130 and I contested the result which led the Dr to use 3 other BP apparatus and they all showed same results and I was put on anti hypertension meds. 

I went about my business, but all was not well as I started getting tired easily and my heart rate was always too high. There was no explanation.  

Then came 2020 February when the country went into lockdown.  I knew I was sick and I wasn’t eating but no one could really say what the problem was. 

In Nigeria the health care system is very poor and that is a problem where getting a diagnosis is concerned.  

I went for abdominal scan and then chest XRay and it was discovered I had pleural effusion and the kidneys had fluid gathered around it. 

The pleural effusion was drained and about 6 litres of fluid was removed from my chest. Then came the complications of electrolyte imbalance,  severe anemia,  swollen feet and ankle, swollen face in short systemic edema.  

Moving from one Hospital to another until we got a kidney centre and the consultant Nephrologist after taking the history and seeing the result ordered more tests to confirm her suspicion,  she arranged a consultation with a Rheumatologist who agreed with her suspicion. That was in August of 2020. I was admitted immediately and the induction treatment was started. It took a whole year from when I first reported my first symptom and so much damage to my body before I got a diagnosis.

Now the journey to healing has began. LN is a disease so rare that 95% of people in Nigeria have never heard about it. Even I never knew what it was until I was diagnosed with it. 

I realise I was lucky as I couldn’t have live much longer if I hadn’t been diagnosed at that time. 

Now I’m still on induction using Mycophenolate Mofetil and other medications.  I’m hoping to go into remission, I’m hoping to live a somewhat normal life. I understand life as I knew it is over for me but I will not let this disease limit me. 

I have decided to look for ways to educate and create awareness about the disease in Nigeria.  I believe a lot more people can be saved from sever kidney damage if only they know where to look, if only they can get the resources to seek for help and if only they are aware of the existence of this disease.  

I’m a zebra living in a world of horses and no one understands what it means to be me.