22 November 2023 by Limpho Sello

Nkopane Ntlhabo, aged 45, is on a mission to educate people about collagenous gastritis – a rare disease he was diagnosed with in 2020. Credit: Limpho Sello.

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What began as a typical day for 45-year-old Nkopane Ntlhabo and his wife on 27 September 27 2020, turned into a tragic day when Ntlhabo experienced excruciating pains in his stomach, rushing quickly to the toilet.

Ntlhabo, who often suffered from a runny stomach, found himself inexplicably exhausted after every bout of watery stool. When he stood up from the toilet, he was shocked to see blood.

Disturbed, Ntlhabo hurried back to the house to explain to his wife what had just occurred.

“I was restless, frustrated, and confused about what was happening to me,” Ntlhabo shared with Uncensored News on November 13, 2023.

The Ntlhabo family rushed to Queen ‘Mamohato Memorial Hospital (QMMH), Lesotho’s only tertiary hospital. Adding to the ordeal, Ntlhabo had to make three toilet stops on the way to QMMH, experiencing both bowel issues and significant blood loss each time.

“The exhaustion worsened to the point where I fainted on our way to the hospital. When I regained consciousness, our car was parked by the road, and my devastated wife was trying to revive me,” he recounted.

Miracle Blood

With every drop of blood lost, doctors observed that Ntlhabo required a blood transfusion to sustain his life. He needed four packs, each half a litre, of blood.

Lesotho has been grappling with a recurring blood crisis for over a decade, prompting doctors to appeal to patients’ friends and family to donate this life-saving liquid. Last month, a blood donation campaign in Mafeteng addressed the critical need for essential health services, including a sufficient blood supply.

Dr Richard Banda, the World Health Organization (WHO) Country Representative, emphasised the vital role everyone can play by regularly giving the gift of blood.

Dr Banda emphasised, “The blood donation campaign slogan, “Give blood, give plasma, share life, share often” underlines the role every person can play by regularly giving the valuable gift of blood to create a safe and sustainable supply of blood and blood products that can always be available to needy patients.”

He added: “We call upon government, partners, and all stakeholders to mobilise support at district and national levels in strengthening and sustaining blood programs to promote regular, voluntary, unpaid blood donation.”

In October, Lesotho held a blood donation campaign in Mafeteng district. Credit: WHO Lesotho Facebook Page.

Despite continuous efforts to recruit regular blood donors, Lesotho Blood Transfusion Services (LBTS) blood banks often run dry, worsening during significant holidays like Christmas.

LBTS Recruiter Rethabile Ntlobo revealed that there are only 18 blood units to serve all hospitals across the country, highlighting the persistent shortage.

“We will only have enough blood when donations keep coming in consistently. It becomes worse when a patient needs a rare blood group because they must receive blood from donors with the same negative blood group,” Ntlobo explained.

Ntlhabo, amidst his treatment, faced the challenge of a rare blood group requirement. He stressed, “People would donate, only to be told that their donated blood groups do not match with mine. I had to beg for more.”

Challenges Faced by LBTS

The Lesotho Times reported that LBTS faced challenges in collecting enough blood after stringent regulations were imposed by the Ministry of Education and Training. These regulations, in response to parental complaints, restricted the LBTS from sourcing blood from learners, who were significant blood donors in the country.

Ntlhabo, aware of the blood shortage, understood the urgency as doctors insisted he needed a blood transfusion to survive despite being on a drip and receiving medication.

“Covid-19 restrictions worsened an already dire situation,” Ntlhabo remarked. “I waited for a week and a couple of days before I got my first transfusion. I was told it was not enough and had to get three more. People donated, but their blood groups did not match mine. I had to plead for more.”

Transporting school children to and from school for a living, Ntlhabo was fortunate that some colleagues and family members came to his aid.

According to the World Health Organisation (WHO), more than 50 percent of blood supply in 54 countries is collected from family/replacement or paid donors.

“Many patients requiring transfusion do not have timely access to safe blood,” reads a WHO website, adding “Providing safe and adequate blood should be an integral part of every country’s national health care policy and infrastructure.”

QMMH Medical Officer in the Surgical Department, Dr Mamotena Ramabolu, emphasised the daily impact of blood donations on morbidity and mortality outcomes.

“The availability is one of the biggest factors that determines the probability of obtaining a lifesaving or life-changing procedure, post-operative outcome of the patient, and length of hospital stay.”

While Ntlhabo eventually received a blood transfusion, witnessing the deaths of all the patients in his ward before it arrived almost stole his mental well-being.

“I felt like their deaths were affecting me mentally and interfering with my recovery. I asked for an early release from the hospital. Nurses agreed and arranged for a doctor to check on me regularly due to the rare condition they were monitoring,” Ntlhabo said.

Rare disease revealed

Ntlhabo’s journey began with sharp stomach pain, leading him to seek answers from doctors. However, instead of finding relief, he endured persistent sharp stomach pains, only for clinicians to administer painkillers.

Frustrated, Ntlhabo turned to over-the-counter medicines. “By that time, I had lost my appetite. My digestive system was also affected because I felt that the food stayed somewhere along my chest, not passing down to the stomach,” Ntlhabo explained.

At the height of Covid-19 restrictions in early 2020, Ntlhabo was admitted to QMMH.

“My condition shocked doctors, and the initial test results indicated that I have Inflammatory Bowel Disease,” he recounted.

With each passing hour and day without improvement, more tests were conducted to reach the right diagnosis. Eventually, Ntlhabo was diagnosed with collagenous gastritis, a rare condition that primarily affects the digestive system.

While signs and symptoms vary depending on the age group, National Organisation of Rare Disease (NORD) says initial symptoms in children and young adults often include anemia and abdominal pain, whereas older adults often experience chronic watery diarrhoea associated with collagenous colitis, celiac disease, or both.

“The cause of the condition is unclear. Due to the small number of cases, no standard therapy for collagenous gastritis has been established based on randomised, controlled clinical trials,” reads the NORD website.

Ntlhabo describes the journey as distressful, accompanied by a lack of specialised medication in clinics and hospitals across the country.

“Although I received a blood transfusion that saved my life, the journey to recovery was prolonged and expensive. Given that this was a new disease, accessing medication was a real struggle. Even pharmacists did not have some of the pills prescribed by doctors. We had to buy medication in Bloemfontein (South Africa). The medication cost M900,” Ntlhabo shared.

In addition to the M900 medication cost, there were transportation expenses to and from Bloemfontein. Faced with the financial strain of purchasing medication from Bloemfontein, Ntlhabo and his family approached a local pharmacy to order the medication on their behalf, with a M1,300 fee.

“The medication was to control the flow of my blood, but I eventually stopped using it because I could not afford it. Everything is in God’s hands now as I depend on a cheaper medication that costs me M12,” explained Ntlhabo.

To date, Ntlhabo is the only known patient with collagenous gastritis in Lesotho. Despite being a member of an international collagenous gastritis patient support group, Ntlhabo suspects there may be misdiagnosed patients in Lesotho.