He likes his suits neat.
But what’s unknown is that the dark, three-piece plaid suits hold his personal story firmly in place. The narrative begins with a newborn baby-boy who actively came into the world screaming two and a half decades ago.
Excited to meet his family, the Odek’s.
Passionate to explore the world.
He cried his lungs out: a sign of a healthy baby.
He was the last born in a family that already had three siblings; all girls.
A bouncing baby boy! His parents announced as young Anthony Odek was discharged from hospital and went home to his doting parents and sisters. He breastfed well and slept well too. In fact, his sisters took turns at holding him marveling at his sharp cry, tiny feet and toes. They fondly called him ‘Tony.’
A mother’s heart carries an eerie suspicion when something seems amiss. This observant mother noticed that Tony’s umbilical cord was slow-healing. It had been 16 weeks yet it still looked fresh. Ideally, a newborn’s umbilical cord stump should fall off about two weeks after birth. A visit to the doctor and a battery of tests later showed that little Tony had severe haemophilia Type A.
Catching haemophilia early in babies
What did this mean?
That her newborn son had a bleeding disorder where the blood fails to clot normally due to a deficiency or abnormality of one of the clotting proteins. For Tony, he was lacking factor VIII which also meant that he was more prone to spontaneous bleeds. Haemophilia Type A is also known as Classic Haemophilia and about four out of every five people with this inherited condition have this sub-type.
As the first person in their family with haemophilia, this marked the beginning of a journey to ensure that this last born in a family of four had a healthy and fulfilling childhood. However from family chat, he suspects that his grandfather also had haemophilia due to the episodic bleeds he used to have. However this was never diagnosed hence leaves much of it to speculation.
Dr Kibet Peter Shikuku, haematologist at Kenyatta National Hospital notes that whereas bumps, scratches and scrapes are a normal part of childhood, haemophilia can be diagnosed in the first year of life. The failure of minor abrasions to self-heal or take longer than expected should trigger a degree of suspicion to test for haemophilia.
A tooth extraction or spontaneous nose bleeding is another reason to see a doctor. Unfortunately, babies with haemophilia cannot speak hence it’s important for parents and guardians to be observant. In such a case, cases of internal bleeding can be blood in urine or faeces or vomit. Seizures, headaches or vomiting after a head injury should be a trigger to see a doctor.
“A child who bruises easily and bleeds too much when injured should be seen immediately and these concerns shared,” said Dr Kibet.
Dr Kibet notes that the ideal management of haemophilia in Kenya is where there is enough factor replacement to prevent and treat bleeds. Factor concentrate are treatment products derived from blood and they improve blood clotting and used by persons with haemophilia to stop or prevent a bleeding episode.
“Currently we rely on donations from the World Federation of Haemophilia. These are ideal for persons like Odek to observe a lifestyle that is not affected by bleeds. We need to find a way to ensure we manufacture our own blood products to take care of the local need,” Dr Kibet said.
Intense sports and bleeding risk
Back to the fanatically energetic young man, Tony….
Like all mothers are protective of their children, Tony’s mother’s voice grew hoarse cautioning him to be gentle in his play to prevent bleeds that would keep him out of school and confined either in hospital or at home. But like a fish takes to water Tony’s sportsmanship spirit was evident. But the young boy always returned with bruises that took longer to heal and whenever he recovered, Tony was back on the pitch faster than he had left.
As he grew up, Tony went into rugby but due to the intense nature of the game, he decided to slow down.
“I gave up contact sports like soccer and rugby to prevent more injuries,” says Odek who is still a sports enthusiast but doesn’t play. He explains the reasons behind the tough choice. “I damaged my knees so badly that I was declared permanently disabled. Over the years, I have improved due to the preventive treatment of factor replacement I get occasionally when it’s available. However, my joint flexibility has been affected and today I walk with a slight limp,” Odek said adding it was as an injury to his knee cartilage brought about by internal bleeding into his joints.
Even as his passion for rugby faded, Odek has found his heart in the law. Today, He is an advocate of the High Court working with a top legal firm in Nairobi.
“My role model is Court of Appeal judge, Justice Daniel Musinga who is a distinguished jurist whose rulings assert the independence of the judiciary and upholds the Constitution of Kenya,”
How does he manage bleeds? He shares the tips behind the RICE protocol
- Rest: Do not move the injured area.
- Ice: Apply ice or cold compress
- Compress by wrapping plastic bandage around injured area
- Elevate injured area to reduce swelling
Looking into the future
Tony is confident that in the next five years, management of haemophilia in Kenya will improve. When Tony is not handling legal matters he is creating awareness on haemophilia. He is an executive committee board member at the Kenya Haemophilia Association ( KHA). As a patient organisation, KHA’s role is to represent the rights of all patients living with Haemophilia and allied bleeding disorders in Kenya. “We promote the rights of persons living with this rare condition by virtue of article 43 of the constitution which upholds the right to access to better health care among others,” notes Odek.
How does he handle haemophilia disclosure when dating?
“Yes I tend to be very open with whoever am dating. I believe whoever is genuine will love appreciate and understand you for you I encourage others to be open so that they can even assist you when injured or having a bleeding episode “Honesty with a spouse or girlfriend/boyfriend is quite important,” Odek added.
Odek is looking forward to equally strong and effective policies and practice that will guarantee the availability of factor concentrate for persons with haemophilia in Kenya.
In the next five years, Odek would like to see Kenya producing their own factor that can be used to prevent and treat wounds.
“We can do this!!!,” concluded Odek
Comment here