We found a new normal after our lupus diagnosis
Francina Bahati painfully remembers the day of her father’s burial as if it were yesterday. She remembers the day not only because it was one of the saddest days of her life, but also because it was on this day that she got first signs of a disease that would change her life.
“It was at my dad’s burial in 2008 when I first experienced a very sharp pain on my left leg and I could not walk properly. I wondered what it was, but didn’t think much about it since it was a very emotional time. The pain soon disappeared and I was just fine,” she recounts.
Soon after the burial, she went back to work and started developing persistent headaches.
“I would sleep with a headache and wake up still the same. Then the symptoms increased. I started getting chills at night and very high fevers during the day. As if that wasn’t enough, I started experiencing severe joint pains that made me take a step and resign from my job since my boss never understood the magnitude of what I was going through,” Francina explains.
From that point, the journey in search of treatment began. Together with her mum, they went from one hospital to another and a series of tests could not put a finger to what was ailing her.
She continues: “There are several instances when I was misdiagnosed and given wrong medication, which made my condition even worse. We had lost hope and on the verge of giving up when in 2009 a friend directed me to a certain doctor. I was hesitant because I knew the results would be the same, but all the same, I tried him out and for two hours, he sat down with me and made me explain in detail about my symptoms. For two straight hours, he listened, asked questions and I answered. Then he said, I think what you have is lupus.”
Francina had not heard about the ‘strange’ disease before.
“In confusion, I asked what that was and he explained that it is when your immune system becomes overactive and your body cells attack each other. He sent me on a series of tests to confirm his suspicion, which turned out positive,” she says.
“The news of the diagnosis was received with mixed reactions. I was happy that what I was going through had finally been discovered and had a name, but in the same breath I was sad because the doctor said it had no cure,” she says.
Francina describes herself before the diagnosis as a young energetic girl with a full time job, and leading a normal life like any other youth her age.
“I used to attend part time classes, I was doing a leadership class on Sundays and to top it all up I was running a small business. I also had time to be with my family and friends. I was content and had never been admitted in a hospital for any reason. The only doctor I saw before the diagnosis was my dentist. I was in perfect shape with no medical issues whatsoever,” she says.
She describes her life after she started getting sick as horrible. “I was always in pain, I couldn’t work nor go to school or run my business. I was totally dependent on my mother and siblings. I had zero energy to even take myself to the washroom, let alone lift a spoon to feed myself, because of the pain,” she explains.
With the diagnosis, everything stopped for Francina.
She shares: “I was living by the minute. I basically became a stay-at-home young girl and couldn’t plan things ahead of time. My day was totally dependent on how I felt when I woke up.”
The first treatment she received was to help with the fever and chills and also correct the deformities she had started developing on her fingers since the condition had affected all her joints. She was then given medication to suppress her immunity.
“It took a while to find the right combination of drugs to manage the lupus. And 13 years later, all I can say is so far so good,” she says.
Lupus is an inflammatory disease caused when the immune system attacks its own tissues and organs. It can affect the joints, skin, kidneys, blood cells, brain, heart and lungs.
“Lupus is a very interesting disease. As much as we have managed it well, there are days you wake up with a flare up. New problems arise everyday due to weather changes, something one may have eaten, stress, or even straining too much with housework. But I greatly appreciate my doctor because the combination of drugs he gave me is working very well and I try my best not to trigger any flare ups,” she says.
Despite the condition, Francina is grateful for the support of her family, which keeps her going.
“I have the best family one could ever ask from, both from my side and my husband’s side. They are very supportive and would do anything to get me the help I need. My friends also visit, give me a listening ear and pray for me. Above all, God keeps me going because I have a purpose to fulfill in this world,” says Francina who now sells homemade fabric conditioner and Swahili snacks to make a living. Far away in Siaya County, another patient, 37-year-old businesswoman and mother of three girls —Ruth Olisa narrates her painful journey with lupus and how she has managed to beat all odds to fight the disease.
“It was back in June 2017 after giving birth to my last born when I fell ill. I went to a local private hospital here in Siaya where I was told I had brucellosis and was put on medication for two weeks without any noticeable improvement,” says Ruth.
She opted to seek a second opinion at a private hospital in Kisumu.
“A variety of lab tests were conducted and they all turned negative. I was coughing terribly, had general body weakness, a persistent headache, stomach upset and experienced difficulty in breathing,” Ruth explains.
“I recall my husband calling the physician to inform him that my condition was getting worse and the response he gave wasn’t pleasing. He told my husband to give me painkillers. We decided to seek another opinion from Avenue Hospital in Kisumu where I was admitted in September 2017. I was in pain,” she adds.
While at the hospital, her condition got worse and she was diagnosed with Mixed Connective Tissue /Pulmonary Embolism/Interstitial Lung Disease, which the doctor summarised as lupus.
Ruth offers: “Before the diagnosis, I was a very healthy mother and active in my day-to-day activities. I never had any medical condition before I was diagnosed with lupus. The moment the physician informed me of the diagnosis, I became suicidal. Luckily, my husband, parents and close family members supported and encouraged me and I had to accept the reality.”
Series of misdiagnosis
Due to the condition, Ruth finds it hard to stay in cold areas. At some point, she lost her vision and was immediately put on treatment. Other times, she had to apply sunscreen since she couldn’t withstand sunny conditions.“The skin rash was unbearable, hair loss was normal and the cough was persistent. Having a headache every now and then had become a normal thing,” she says.
For Ruth, fighting lupus hasn’t been a walk in the park, and treatment is expensive.
She describes her treatment journey after the diagnosis; “I was admitted in the Intensive Care Unit for two weeks after I developed respiratory distress and knew I would succumb to the disease. There is a time the anesthetist almost gave up on me. He flatly told my husband that the pneumonia I had was too stubborn.”
“I was doing well until March 2020 when the condition worsened despite attending monthly clinics at the Aga Khan Hospital in Kisumu. I was admitted and put on cyclophosphamide infusion for two weeks. Later on, I was discharged and continued with the clinics. However, in January 2021, things got worse and I had to seek further medical opinion with a Rheumatologist at the Aga Khan University Hospital in Parklands, Nairobi. I was admitted and received treatment for a week. During that time, I was also diagnosed with Covid-19,” she explains.
Upon discharge, Ruth went back to Siaya to be with her children and since then she has not experienced any major flare ups.
“I still use a variety of drugs and I thank God for the progress. I also thank my doctors, Dr Fred Owuor, Dr Okelo, Dr D Farrida and Dr Omondi Oyoo who have worked tirelessly to restore my health, “she says.
Dr Yvonne Wanjiru Thuo, a general practitioner says lupus affects people differently. While some may have mild symptoms that may not affect their day to day life, others may have serious symptoms that will need them to make adjustments to their daily life and work.
“Some patients may need assistance with simple activities, such as bathing and eating. In some countries, lupus is considered a disability and the government provides assistance to such patients” says Dr Thuo.
She notes that the disease can be difficult to diagnose because its signs and symptoms often mimic those of other ailments.
The most distinctive sign of lupus is a facial rash that resembles the wings of a butterfly unfolding across both cheeks, which she says occurs in many, but not all cases of lupus.
She explains that signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterised by episodes, known as flares-when signs and symptoms get worse for a while, then improve or even disappear completely for a time.
The most common signs and symptoms, Dr Thuo says, include fatigue, fever, joint pain, butterfly-shaped rash on the face that covers the cheeks and bridge of the nose, skin lesions that appear or worsen with sun exposure, fingers and toes that turn white or blue when exposed to cold or during stressful periods, chest pain, shortness of breath, headaches, confusion and memory loss. “It is important for one to visit a doctor if they experience these symptoms. In supporting a patient with lupus, it is important to discuss with the patient the kind of support he or she needs,” adds Thuo.
While there is no cure for lupus, treatment focuses on improving the quality of life through controlling symptoms and minimising flare-ups.
The number of people affected by lupus in Kenya is known, Dr Thuo says.