98 per cent of Persons with Haemophilia in Nigeria Undiagnosed – HFN …Foundation Needs N100M for Mobile Laboratory Vans

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By; JACOB ONJEWU DICKSON

The Haemophilia Foundation of Nigeria, (HFN) has said it needs N100million from 200,000 people on a N500 donation for the procurement of mobile laboratory vans to take diagnosis closer to the people and for awareness crusade.

The Founder and Executive Director of HFN, Mrs. Megan Buckie Adediran said this at the Media Forum Quarterly Meeting of the Foundation in Kaduna.
The Executive Director said HFN would purchase N9.5million van for diagnosis to spread across the six geopolitical zones of the country, with each of the vans stationed at the headquarters of the zones; while the fund raising meant to expire in April, 2017 after a 90 day drive is already on-going and yielding positive results.
The Executive Director said that over 650 persons have been trained for the HFN outreach to commence June, 2017 to December, 2017 with hope to cover the whole country, while the Foundation would have ambassadors of 20 persons who will crusade the awareness of Haemophilia per schools involved.
Speaking further, the ED, commended the World Haemophilia Foundation for its assistance to HFN especially with Factors worth millions of naira; adding that Haemophilia called Royal disease in Europe due to its prevalence with the Royal families was first discovered in Nigeria in December, 1969.
She informed that 2017 will be a busy year for immense activities including workshops on girls and people with bleeding to talk on their situation as well as focus on women with bleeding disorder, adding that about 500 persons are to be diagnosed in its 2017 Haemophilia Day.
“Haemophilia is an inherited bleeding disorder. What happens is that some people are born and one of their clotting factors is not active enough.  There are thirteen clotting factors in every human being, and when there is injury these thirteen clotting factors are called to action.
“Normally the best way to explain this is to tell people that it looks like a relay race. When factor one does its own work it passes the baton to factor two, factor two passes to three and thereabout till it gets to thirteen and that’s when we see clot in our wounds.
“Haemophilia can be life threatening because the patient can bleed anywhere, and the major fear with persons with Haemophilia is internal bleeding.  They can bleed to the brain, kidneys and intestine and that’s why we don’t allow these children to play and people hit them maybe somewhere because bleeding can occur anywhere.
“The most dangerous bleeds for Haemophilia is bleeding to the brain, they hardly survived it.  Another thing that is a consequence of Haemophilia is crippling.   Repeated bleeds to the joints especially the knees and the ankles if not treated can cause a cripple on that joint and the child will end up on crutches or wheel chair.
“In developed countries what they’ve been able to achieve in the last 20 years is that once a child is born with Haemophilia they placed them on what is called routine regiment called prophylaxis, every other day they’re being given this injection.  This keeps their factor level normal so the child can do almost anything.

“Prior to when this Foundation started there was no register anywhere in the country, so every patients were on their own.  But through the efforts of this Foundation we’ve been able to now have one national register in the country.

We collect our registers from the Teaching hospitals because we work with teaching hospitals as treatment centres for Haemophila.

“Every department of blood transfusion service at a teaching hospital is where we stationed our drugs for patients to access.  To date we have 304 identified patients across the country, but Haemophilia is one out of every ten thousand births.  So with 180 million Nigerians, we’re talking of 17,000 – 18,000 thousand persons.  Whereas we have 304, so about 98 percent are out there undiagnosed not knowing what is wrong with them.

“The reason for this media forum today is in line with the last statement I made, 98 percent of persons with Haemophilia in Nigeria are undiagnosed; 98 percent of boys and girls with Haemophilia stand the risk of bleeding to death at circumcision level or from an injury.  Ninety-eight percent of these Nigerians are at risk of dying maybe after a car accident the person is bleeding and nobody knows what to do.  Ninety-eight percent of these people who are women stand the risk of bleeding to death at child-birth where nobody knows why.
“HFN intends to procure mobile laboratory vans and take the diagnosis to the people.  We looked at our register and saw that there are 304 people we have just in the urban areas, what about the rural areas?  So what the Foundation is trying to do now is to acquire mobile vans.
“What we intend to do is to carry out a 90 days Fund Raising Challenge, the 90 days will start on January 18 – April 17, 2017, and April 17 happens to be World Haemophilia Day.  Within these 90 days we’re hoping to touch well-meaning Nigerians who can help this Foundation.  Two hundred thousand Nigerians donating N500 each will help us acquire six mobile vans for the six geopolitical zones to help with diagnosis.

“Our intention is to commence outreach programes by May 2017, it’s going to be simultaneous, each month there’ll be six states visited across the country; one state in each geopolitical zone.  So we hope by December we would have at least visited four local governments in each states of this country,” she said.

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