Thu. Jul 25th, 2024

Living With Haemophilia For 24 Years Has Not Been Easy, Says Victor Ugochukwu

By Iliya Kure

Kaduna (Nigeria) – Growing up with bleeding disorder can be challenging, especially in a family that has no knowledge of the existence of the disorder – other than attributing such conditions to witchcraft and the likes.

That was the case of 24 year old Victor Ugochukwu, a student of Federal University of Technology Minna, North Central Nigeria.

Ugochukwu, a haemophiliac and his family had no knowledge of why he had been bleeding since childhood, until in 2012 when the family came across Haemophilia Foundation of Nigeria, an NGO that supports haemophiliacs in Nigeria.

According to Ugochukwu, “for 20 years I have been experiencing swollen joints without having proper medication.”

He said, “my mother uses hot water to massage the joints not knowing that it was against the rule which used to be very painful;” adding that anytime he had that experience, and used hot water to massage his joints, it took upto two weeks to get relieve.

“It was in 2012 that I got to know about the disorder very well and started getting Factor – a medication that relieves the pains. After much orientation, we were given a fomular called RICE meaning, Rest the joint, Ice it, Compress it using bandage and Elevating it, using a pillow or something high a little. With this formula, I gained relief within four days,” he said

Haemophillia is an inherited bleeding disorder where a person lacks the ability to form a clot after an injury, be it internal or external. The person keeps bleeding until they are infused with factor, or blood containing the missing factor.

Haemophilia is generally passed on to a child through a mother’s X gene. It could however be caused (in few cases) by a mutation in the person’s own gene.

According to the Executive Director, Haemophilia Foundation of Nigeria, Megan Adediran, about 1 in 10,000 persons are born with haemophilia and such people do not bleed faster than others, but longer, saying that they lack clotting factors (certain protein component) in the blood that helps control bleeding.

Adediran pointed out that the most common type is Haemophilia A (Classical) caused by low level of factor VIII in a person; and Haemophilia B (Christmas disease) caused by low level of factor IX which affect 1 in 30,000 persons.

She said symptoms include bleeding for long resulting from a cut; removing a tooth; circumcision; after surgery; big bruises; and sudden bleeding inside the body for no clear reason; bleeding into muscles and joints especially knees, elbows and ankles.

She however explained that haemophilia cannot be cured but can be managed for the people with the disorder to live a near normal life. She added that in its treatment, the missing clotting factor is injected into the blood stream to stop the bleeding.

“We have had about 213 cases in Nigeria and we have been aiding them with free drugs and we also hope to get our diagnosis pafarometer to conduct free testing to many.”

The NGO is however calling on Nigerian government to employ more Haemophilogist in public hospitals so as to detect early signs, stressing that there is need for proper communications between bigger hospitals and where a carrier is diagnosed to his community health care facility which he frequents.

“I am calling on those who want to partner with Haemophilia Foundation of Nigeria to come and render assistance, especially with the drugs, which cost about N250,000” she said.

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