Carlos Maube: a tale of selfless devotion to support others

Born in Mombasa, Kenya, Carlos Maube grew up with a mystery condition that would define his childhood. From a very young age, he suffered a series of internal and external bleeds that seemingly never stopped. The doctors simply could not figure out what was causing them nor how they could be prevented.

Things came to a head one day when Carlos was admitted to hospital after vomiting blood. At a loss as to what to do, one of his doctors decided to carry out investigative surgery. It was a decision that would see Carlos fall into a coma for two weeks, when no precautions were taken to control his bleeding.

“The doctor who was taking care of me in the hospital told my mother that he didn’t know what else to do with my condition and, for that reason, he washed his hands of the case,” recalls Carlos, thinking back to that episode in his life. “I’d actually lost hope of living again because haemophilia had brought hell in my life and I gave up.”

A chance diagnosis

Fortunately for Carlos and his family, a nurse at the clinic witnessed what he was going through and recalled treating a boy with similar symptoms. She recommended the doctor take Carlos’ blood sample for a haemophilia test.
The result confirmed her suspicions: Carlos was diagnosed with haemophilia. Doctors adjusted his treatment accordingly and within days, there was a marked difference in the way Carlos’ blood was clotting. Soon, he was out of hospital and, receiving appropriate care, able to lead a normal life.

While most people would probably distance themselves from the suffering they’d experienced, Carlos embraced it for the greater good. It became his mission to help other people in Kenya who might be living through a similar experience.

“After my own experience, I decided never will I allow someone on this earth – be it a child or an old person with haemophilia – to suffer. That’s why I decided I would volunteer with the Kenyan Haemophilia Association.”

A fundamental challenge

When Carlos was young, haemophilia care in Kenya was only available in Nairobi and Eldoret. But outside of these two cities, care remained basic and diagnosis rates remained low because of a lack of knowledge and appropriate equipment.
Even in cases where people had a diagnosis, they often had to travel long distances to receive care. Many people could only afford to travel in an emergency, which drastically increased the chances of disability and even death.

Working with the Kenya Haemophilia Foundation

To help address these challenges, Carlos became a volunteer at the Kenya Haemophilia Association, a NNHF project partner. He is an administrator for them and plays a key role in organising and delivering awareness raising events, clinic openings and educational sessions.

Since he started volunteering, Carlos has helped set-up the first haemophilia care clinic in Mombasa, Coast Province. The clinic has had a huge impact on those living with haemophilia in the region, who no longer have to travel vast distances to access care and pay the costs associated with that travel.

The newly established clinic also includes diagnosis facilities. Within the first year of the Kenya Haemophilia Foundation’s work in Coast Province, the number of diagnosed patients had increased from three to 20.

But Carlos’ ambitions aren’t restricted to Kenya. He has also established himself as a spokesperson for haemophilia, helping set-up a regional youth group for Africa, where he hopes sharing his experiences and ideas will help improve care across the whole region.

Spreading knowledge for the greater good

Carlos serves as an inspiration to others, thanks to his selfless commitment to improving haemophilia care for other people in Kenya and beyond. His devotion to helping others shows us that even people who had once lost hope can become positive ambassadors for the condition.

Teaming up to reach out

His story is also an example of where knowledge sharing and collaboration can improve care drastically. If the nurse hadn’t shared her experience, Carlos might never have received the proper diagnosis.

Recognising the importance of teaming up, the Kenya Haemophilia Association has brought together three associations which were not previously aligned in their activities and messages. Now that the Association is working as one, they are making clear strides in improving haemophilia care.