By Chioma Obinna
HER pretty face gives no indication of her predicament. At a glance, cute, cheerful and cuddly Oluchi  Ukaegbu, 6,  is any parent’s desire, but on closer encounter, a shocking discovery awaits the unwary.

As the second child of  the Ukaegbus, cute Oluchi’s birth after a long delay, is regarded as a divine intervention, since her parents had  been waiting on the Lord for long before she came.

But  the joy of her birth was rudely cut short ever since she was diagnosed of an abnormal bleeding disorder called Haemophilia -a genetically inherited bleeding disorder where there is a deficiency of a clotting factor in the blood. It results in a form of bleeding tendency. Haemophilia patients often suffer from easy bruising and bleeding into muscles and joints. In view of  the genetic pattern of inheritance, the disorder usually affects males, but  Oluchi, appears to be the exceptional female. Haemophilaics are born when both parents possess the haemophilia gene.

Although after her birth, there were signs that all was not well as she had swellings by the neck  expected to have disappeared after some time.

When it became obvious to the parents that there was more than met the eye, they decided to check out what the problem was all about.

The search for explanation began, when Oluchi and her mother traveled to their home town, Nnewi, Anambra State. At a hospital there, doctors suggested the possibility of her being a haemophilac.  As  they were due to travel back to Lagos, Oluchi was referred to the Lagos University Teaching Hospital (LUTH) were her blood sample was taken abroad for proper examination. Behold, it was confirmed that she is indeed a female haemophiliac.

Devastated, the parents could not understand what this strange disorder is all about. They knew next to onothing about it. The search for reprieve  continued, unfortunately, management of such disorder is not easy both financially and otherwise as the treatment largely depends on blood and blood products.

Oluchi’s parents confessed that for each bleeding crisis,  a minimum of N5,000 per day is required until the bleeding stops.

Worse still, Oluchi and other Nigerians are facing serious problems as medicaments required to treat the disorder are unavailable in Nigeria.

Currently, Nigeria has no functional body in form of a National Federation of Haemophilia that would liaise with the world body to assist with the management.

Narrating their ordeal to Good Health Weekly, shortly after an interactive session with families of haemophilaics,  Mrs Ukaegbu who was in tears called on the Federal government to urgently recognise and support the National Federation of Haemophilacs with a view to saving the lives of Nigerians with the disorder as cost of treatment is not anything near cheap.

“I never knew there was a problem like this until my baby was diagnosed of it. The first time she had bleeding was the time they collected her sample for examination and before we knew it she was almost passing out. My husband was going to the General Hospital Lagos on Okada everyday to buy the “factor”  that is needed at the cost of N7,000 for almost 16 days.”

Calling on the Acting President Goodluck Jonathan to help save her daughter’s life, she said “Before we had her, there was a delay after the last child. I had the last child before her in 1998. Within that period we were going from one prayer house to another. Luckily we went to Canaan land where I prayed  and God answered my prayers. All through the period there was no problem. After one month,  I started noticing some lumps by her neckside.

“We took her to a health Centre but there they did not know anything. During the time of immunisation, when they give her the injection it will swell up, abnormal swell up. Then we did not know that we were not supposed to massage because we did not know that she was bleeding inside. Each time she was immunised, the place would swell up. This continued until we got to LUTH where the problem was diagnosed”

“We want the government to help us even if they cannot produce the factor  locally or subsidise it, they should link us up with the World Federation of Haemophilia  (WFH) for us to get better treatments.

“It is expensive managing the disorder. Right now, doctors in LUTH are helping us by producing a substitute  for the actual concentrates locally at a reduced price of N3,500 per pint.


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