When blood can’t clot properly, excessive bleeding (external and internal) occurs after any injury or damage.
Haemophilia, a seemingly rare condition, needs to be addressed and acknowledged as it has cost some in our society their lives.
Delaying in accessing early treatment, misconceptions and a lack of awareness on the haemophilia condition are among the many contributing factors that haemophilia patients who meet their demise face before visiting the health facilities.
Boniface Nzyungu (25), a third born child in a family of five, explains that people with haemophilia can live a happier longer life if they start medical treatment on time.
Nzyungu is a third year student pursuing a bachelor’s degree in medicine. He explains that since haemophilia is an inherited disease, parents should be equipped with early knowledge and observe their children as they grow.
Haemophilia types A and B are inherited diseases. They are passed on from parents to children through a gene on the X chromosome. Females have two X chromosomes while males have one X and one Y chromosome.
Nzyungu is not the only victim of haemophilia in his family but did lose two of his biological brothers to haemophilia.
His older brother died in 2006 while his younger brother died in 2012. His parents only realized that their two children had haemophilia after Nzyungu was detected with haemophilia in 2016; adding that a lot of families in most communities termed haemophilia as misfortune, a curse and witchcraft within the family or from family members.
It is unfortunate that most families spend their time with traditional doctors and they come to realize after the disease has brought even more harm to the patients.
He stressed that the community must know that the disease will continue existing therefore if they discover any unusual bleeding from their children, they must ensure that they rush their children to the nearest health facilities for early screening.
A mother of two boys Silvan Mlengu, 9, and Harrison Mlengu, 2, told Your Health that despite the fact that the disease was not well known a lot of people still suffer from haemophilia.
Ms Regina Valency who also lost both her older and younger brother is currently undergoing haemophilia treatment.
She narrates how when her first child fell down, his head was swelled up. Sure in her mind that the head will improve in a few days, she was surprised to see that it continued to remain engorged and this scared her so she decided to rush him to hospital.
When she arrived at the hospital, a doctor who attended to her child asked Ms Valency if her family had a child who suffered a similar challenge. She recalled her elder brother who lost life after bleeding too much.
The next step Ms Valency did was to call her mother to ask how her brother died. After A telephone conversation she realized that her elder brother had indeed died from the disease.
According to her, doctors continued with investigate Silvan’s condition and the results showed that her child required haemophilia testing.
She was transferred to Muhimbili National Hospital (MNH) now her two children are both undergoing medical treatment.
It is estimated that 80 percent of people with haemophilia live in the developing countries including Tanzania whereby many of them are still undiagnosed, and few receive adequate care.
MNH haematologist Dr Yonazi Mbonea says that in a country with a population of almost 60 million only 167 people have been identified and registered. “Normally with regards to the current number of population, we are supposed at least register 6000 patients but records indicate that until March this year only 167 patients have been confirmed and registered.”
“We are sure that almost 5000 haemophilia patients are undiagnosed and they are facing a lot of health challenges because they not diagnosed for them to receive medical treatment,” said Mbonea.
To ensure that the treatment reaches a large number of the currently registered patients, MHN, KCMC, Bugando and Mbeya provide medical assistance to patients.
According to him, the disorders affect men more often compared to women because females have an additional X chromosome that acts as a “back-up.”
Since males only have one X chromosome, any mutation in the factor VIII or IX gene will result in haemophilia.
The biggest challenge that leads to people not being registered was discrimination by the community.
Most of families or communities do not see the importance of going to the hospital and they lose out on a lot before accessing treatment
Haemophilia is a rare disorder in which blood does not clot in one’s body because it lacks sufficient blood-clotting proteins (clotting factors).
Therefore, a person who has haemophilia, may bleed for a longer time after an injury than one whose would blood has clotted normally.
Following this, the government, through Muhimbili National Hospital (MNH) is aimed at implementing government efforts by increasing access to diagnosis services in all referral hospitals across the country and increase the number of haematologists and proper infrastructure for patients.
Official statics indicate that based on the current population, Tanzania is likely to have between 6000 and 12000 patients while those who have been diagnosed and have started treatment are only 167.
Statistics say one in every ten people has haemophilia, thus basing on the Tanzania’s population, people with haemophilia are estimated to be between 6000 and 12000 and are evenly distributed in the country.
The implementation of the project will increase access to diagnosis services in referral and regional hospitals and thus register an increase in the number of people diagnosed with the disorder and subsequently treated.
The project will ensure availability of haemophilia data, and for research studies at improving service delivery so that the condition be listed in national strategy for Non-Communicable Diseases, adding that the scheme will also help in preparation of National Treatment Guidelines.
Symptoms of haemophilia include swelling, bleeding and brushing of which most of them start to show and manifest after birth.
People with haemophilia can live a normal life if they are provided with treatment including clothing factors.
There are two major types of haemophilia, type A and type B. In haemophilia A, there is a lack of clotting factor VIII.
This accounts for about 80 percent of haemophilia cases.
About 70 percent of people with haemophilia a have the severe form.
In haemophilia B, also known as “Christmas disease,” the person lacks clotting factor IX.
Haemophilia occurs in around 1 in every 20,000 males born worldwide.
Both A and B can be mild, moderate, or severe, depending on the amount of clotting factor that is in the blood.
From 5 to 40 percent of normal clotting factor is considered mild, 1 to 5 percent is moderate, and less than 1 percent is severe.
It goes without saying that at the end of the day, the cries for intervention, help and education will be directed to the government.
However, it is with good reason, especially in out superstition-driven community that the government come up with community awareness programs, improve medical facilities worldwide and medical treatment so that we are able to receive medication and treatment for the affected.