As a young mother, Diana Nthigah would often wonder why her son bruised so easily,.
The resident of Mwea in Kirinyaga county, said she became curious since she had not experienced the same with her other children.
The condition which affects X chromosome is prominent in men while women who are exposed become carriers.
This is because men have only one X chromosome while women have two, allowing one to continue functioning when the other is affected.
Doctors needed to undertake blood transfusion on the child but at the time, terrorists had just attacked the US embassy and the demand for blood was extremely high.
“I had to ask people to go Kenyatta National Hospital to donate blood for my child to be treated but they were already stigmatising me because of his condition,” she said.
That marked the start of endless travels to the hospital as the child grew and the bleeding continued after getting small bruises and cuts.
Before being referred to KNH, medics in local facilities would keep referring her to higher facilities as they did not understand the condition.
Without drugs to manage the condition, the child would often have blood transfusions. Things got harder as community members stigmatised her and attributed the condition to witch craft.
She said she was at a loss over what to give the child so he’d stop bruising and fully depended on medics.
“Many times, I was forced to explain to doctors why my child could not be injected with a drug that contained aspirin because it affected clotting," Nthigah says.
“Most of the children with the condition back then suffered bone deformities because there were no drugs to manage it,” she said.
Nthigah said back then, it would cost her up to Sh80,000 just to have a single tooth extracted to manage the bleeding.
“We are very grateful that we can now get the clotting factor for free, though the hemophilia centres are not as many. It’d be easier for parents from Kirinyaga to get a treatment centre,” she said.
Mwangi said his family was always concerned over his constant bruising and swelling and underwent transfusions.
The condition made it difficult to study and he dropped out immediately after form four, opting for farming.
“Boys will always be running and fighting, and just a slight fall would give me massive swelling on my joints,” he said.
It was in 2005 when he started receiving the clotting factor 8 after donors came in and made it easier for families with such conditions to access them.
But Kenya Hemophillia Association says more than 4,000 Kenyans suffering from the condition are yet to be diagnosed, putting their lives at risk.
“One in every 10,000 children born in the country has the condition, meaning we have about 5,000 people but our association has only reached 1,000,” the association’s treasurer James Kago said during the World Hemophillia Day celebrations in Murang'a town.
The association receives donations from the World Federation of Hemophillia and provides it to patients for free through 25 clinics nationally.
Kago said the actual costs of the clotting factors are too high for a common Kenyan to afford and wondered what the fate of patients would be if donors pulled out.
A 50ml dose given to a two-year-old child costs Sh50,000 while a single dose for an adult costs Sh300,000.
Boys undergoing circumcision or other rites of passage that cause bleeding have to be managed for four weeks before the process can be done to avoid over-bleeding.
“We have to assess areas where they conduct circumcisions in the bush and emphasise the need to check the boys for hemophilia though we don’t interfere with their cultures," Kago said.
“In some cases, a boy over bleeds and dies and is labelled a weakling when it was caused by a bleeding disorder.”
He said women who carry the gene also experience symptoms such as heavy menstruation that can at times occur up to two times a month and are commonly wrongly diagnosed with hormonal imbalance.
“Many cases of women who die during delivery are of women with undiagnosed bleeding disorders. Its important for women who bleed heavier than normal to visit our clinics for tests which are free”.
Kago said the centre uses up to Sh2 billion annually to manage the 1,000 members currently on its data base.
He said their heavy reliance on the drugs means their lives would be at risk if they were not available.
“With the donor apathy being experienced globally, our appeal is for the government to set aside funds to start supporting some of our programmes so that we don’t lose lives if donors suddenly pull out”.
Even more worrying is the fact that hemophilia is not covered by Social Health Authority as Kago called on the government to prioritize it under universal health coverage.
Judy Mwaura, the lead nurse at the hemophilia clinic at Murang’a County Referral hospital said many families from the region have been supported since the centre started in 2018.
She said patients who get to the unit are immediately injected with the clotting factors donated by the Kenya Hemophillia Association.
“We just give a report of the number of patients we have and the clotting factor they require and they provide us with it”.
Mwaura said many patients struggle to raise fare from far flung counties to Murang’a while others over-bleed before getting to the hospital.
As such, she has provided them with her phone number and provides them with the necessary support.
As a pediatric nurse, Mwaura said she keeps a few vials of the clotting factor in the ward just in case undiagnosed children exhibit symptoms and has trained other health workers in the ward to identify the condition.
“First thing, we ask children to discourage the young boys from playing too much and use ice packs after a child falls. We also ask them to ensure they have Traxenamic acid which controls bleeding so they can manage the child as they rush him to the hospital.
One out of 10,000 children is born with the condition that stops blood from clotting well, with over 4,000 people remaining undiagnosed, putting their lives at risk.
Kenya Hemophillia Association uses about Sh2bn annually to manage 1,000 patients under its database.
It receives the costly drugs from the World Federation of Hemophillia and donates it freely to 25 centres nationally.
