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Bleeding Boys, Needs Our Help on HWN HAEMOPHILIA UPDATE

Haemophilia Foundation of Nigeria (HFN) has called for policies that will make factor assays and clotting tests compulsory before a male child is circumcised and while pregnant women attend antenatal clinic.

The tests to investigate unexplained bleeding or clotting could help identify haemophilia—a group of hereditary disorders that impairs ability of the blood to form clot—in newborns or pregnant women who may be carriers.

That will help us save these children,” said HFN executive director Megan Adediran. “We want policies to put haemophilia on the radar of the federal ministry of health, policies to put us in the budget of the ministry.

We have to persuade and convince the government to be as committed as the other stakeholders and include haemophilia in its policy, said Allain Weill, president of the World Haemophilia Foundation.

Senator Shehu Sani, chair of the Senate committee on local and foreign debts, has invited HFN to speak to the health committee about bleeding disorders in efforts to push for stronger political support and funding.

At around N1,000 unit cost, the tests evaluate coagulation factors—needed for blood to clot and stop bleeding.

Haemophiliacs have low factors and bleeding longer than necessary from routine injuries and need a medication of “factors” to help their blood clot.

They are also prone to deep internal bleeding, causing swelling or limb numbness, and arthritis associated with the condition can damage joint or cause disfigurement.

The disorder is sex-linked affecting only males, though women can be carriers.

Only one female is said to have developed haemophilia as a result of genetic mutation.

Praying to die

Adediran started the Kaduna-based HFN to help to help families deal with haemophilia. She says there was no hope 20 years ago when her son was diagnosed with the condition.

It was like travelling through a tunnel, with no light, no roadmap, where nobody has gone through to tell me this is where you should go. That’s how it was, she says.

Now I am looking at 20 years today to see a better thing than what I am seeing today.

She says the policy are to mark success for persons with bleeding disorders and “bring to end the days of agony or cries by mothers, the day when you hold your child and you wish he is dead.”

I prayed for my son to die, thinking death was easier than the pain he was going through after bleeding for 21 days. But today I can tell a mother who will have a child with haemophilia that you will not hold your child and pray for death, he will go to school, not be on crutches at the age of seven and will not look at life and ask you, mother, why me?.

Expensive and fatal

SS1 student David Aremu’s leg is slightly crooked from bleeding and arthritis associated with haemophilia.

Even minor injuries bring on full-blown “crises” that keep him away from school at least half a term.

I don’t have enough time for school, so I have to struggle and read hard. I can either go one or one and a half month out of three, he says.

Last year, he had internal bleeding in the head, a headache that lasted five days, and for three days he couldn’t open his eyes, his mother Victoria Aremu says.

The haemophilia treatment centre at National Hospital was shut over strike, and a private hospital couldn’t handle her son or get treatment factors, costing N65,000 a vial.

The HFN sent her nine vials—three a day. After the second day, he opened his eyes, Aremu says.

Sometimes I am helpless, because I can’t afford the money, nobody to help me. We are soliciting that Nigerians should stand up for us. We don’t want to lose our children.

Oge Ohadomere is mother to two sons living with haemophilia, one of them so rare regular factors don’t help his blood clot. She is servicing a US hospital bill for $70,000 at $500 a month to keep in good stead with the hospital which supplies treatment to manage her son’s crises.

Spending on a haemophiliac child is a “bottomless pit”, Ohadomere says.

I have gotten to the point where I wake up in the morning and the whole pillow is soaked in blood because my child just lost a milk tooth, Ohadomere remembers.

The only solution is a drug worth $7,000—that’s around N2.1 million for one dose. And to stop that bleed, you need a minimum of two, three doses to stop just a bleed. That’s one crisis. You can have five crises in a month. That’s almost N10m. I don’t have it.

Even if other parents have refused to advocate, I will advocate for my children, because I need to see them grow up and become something.

The costly treatment in the US is seen as paving way for treatments to be less expensive in other places in the world, according to Val Bias, president of the US Haemophilia Foundation, as newer products get easier to infuse and cheaper to make.

The future is bright with the products. We have seen no shortage of discovery, no shortage of research. There are more products now than there ever were. And there are more products in the pipeline than there ever were in my lifetime, says Bias.

Source: DailyTrust, HWN Africa.

: 2016-07-15 18:16:11 | : 1645