Ama’s Story: Living Through Diagnosis, Treatment, and the Hidden Trauma of Autoimmune Disease

In 2010, I started feeling unwell. Nothing specific, just a general feeling of being off. One morning, I woke up and my roommate told me that half of my face was swollen. Later, I noticed swollen lymph nodes (hard like balls underneath the skin) in my neck, armpit, and pelvic area. It felt like everywhere lymph nodes could be found.

I experienced a kind of heavy fatigue that made me sleep a lot. Being in my second year in school and sleeping while my mates were out studying made me look unserious.

In 2011, I changed my hostel and found myself in a new environment. I cannot remember exactly what happened that day, but I recall ending up on a hospital bed at Korle Bu. Whatever it was my family had became tight lipped about it, but I gathered bits of the story as the days went by.

I later learned that I was first taken to Tema General Hospital, where I was admitted for three weeks. By God’s grace, the doctor made the diagnosis and referred us to Korle Bu. Prof. Addo, a dermatologist, received me because my skin was affected. I remember having rashes that caused intense itching. Miraculously all of that eventually disappeared.

I spent Christmas in 2011 at Korle Bu and was discharged in Febuary the next year. 

One of the good outcomes of this journey was meeting the doctor who cared for me at Tema General Hospital, Dr. Kwashie. At the time of my admission, doctors were on strike, yet he made time to research and understand what was happening, especially since the condition mimics many other diseases and at the time very little was known about it.

After discharge and continued reviews at dermatology, Prof. (my physician) noticed kidney involvement and transferred me to the renal unit. I have since been cared for by dedicated and compassionate doctors.

The Medication:

Nothing prepares you for the shock of being administered methylprednisolone. Having been on oral prednisone for a while, one becomes familiar with the side effects. Weight gain, increased appetite, moon face, and hair issues and even the number of pills to swallow.

However, methylprednisolone takes it to another level.

Today, I live with the evidence of my struggle all over my body, To this day people still stare. I become body conscious, as a result. dealing with those whose opinion of what they see must be caused by pregnancy so the conclusion that it must have been pregnancy that was the cause that story. Dealing with all that on a regular eventually broke me down. Some people even go further to offer unsolicited solutions, clearly not even listening to what I will even be saying. I understand that they may have had good intentions but what good is ignorance proffered aggressively because they are hoping to be right. At the expense of my health and feelings.

In the end, I had to shut out the chatter, the leering eyes, to preserve my mental health. I do not think I have gotten over the trauma I went through. I still prefer to be alone. I still prefer not to go out. I know my medications worked most times, An autoimmune disease can be unpredictable and sometimes I have moments where I am afraid it will be full blown again.

I am grateful to my family, the medical teams, and the physicians who took care of me. I am grateful that I was diagnosed as quickly as I was. The estimated time of diagnosis for some people averages four(4) years and by then for some organ damage may have set it. Its an uphill battle I am on. I intend to win. For the most part I am still here.