Today, allow me to go down memory lane and narrate about a condition that changed the trajectory of my life as a father- a caregiver.

I had been uninformed about Hemophilia until 2009 when I set foot at the doors of Kenyatta National Hospital where I got enlightened on Hemophilia. This was the day that not only proved most fruitful along the lines of seeking medication for a ‘disease’ (so we thought), that we didn’t have a clue about but also the day that I knew that my sons’ bleeding condition was neither a disease nor a curse but a manageable bleeding disorder.

Since 2004 when my third-born son (Now 20yr old) started showing symptoms such as swelling of joints and rampant nosebleeds life hasn’t been quite as usual. The case doubled in the year 2005 (Now 18yr old) when we were blessed with another child who was hemophilic. Frequent visits to and from the hospital started becoming a norm to the extent of absurdity let alone the constant fear of my two sons losing their lives to Hemophilia. (Both of them have Hemophilia A)

Because the two hemophilic kids had to constantly play regardless of their being vulnerable to bleeds, most of the time they came back home either bleeding or with swellings. This meant that their siblings, mother, and I, had to find ways to stop the bleeding or suppress the swelling which at times translated to less sleep or no sleep at all.

Back then, factor was something unheard of and the use of crude ways to stop the bleeds seemed to even worsen the symptoms. I remember even rubbing a hot wet towel around a swelling with the intention to reduce it. Little did we know that we were making it worse instead.

Compounding the reality that a lot more ground on Hemophilia in Kenya had not been uncovered, many cultural norms and practices added insult to the injury we already had. The never-ending prejudices from neighbors and the community that insisted on primitive courses of action pushed us as a family to the edge. Some even went to the lengths of terming us as a cursed family.

This notwithstanding, we trudged on as a family nursing our hemophilic sons and siblings. However, we had to live with the truth that whenever one of them got injured they had to pause their education and stay at home until the day they recovered. Such a case came in the year 2008 when Allan- the second hemophilia son had to stay at home attending to his swollen knee for a whole year without access to education or proper treatment.

Fast forward to the present times, tables have turned and life has become even more bearable, to say the least. Thanks to easy access to medicine, hospitals, and even a community of hemophilic families that can lend a shoulder to lean on. With organizations such as the Kenya Hemophilia Association and the World Federation of Hemophilia coming to our rescue, we rest assured that the provision of factor products will always be within our reach.

Today, it is safe to say that periodic hospital visits, hefty costs of transport, and missing school just because of a minor bleed are now something of the past. This is because home-based treatment is now common as the two hemophilic kids can administer their prophylaxis treatment even without the help of a doctor. This has cut a lot of costs such as maintenance and transport costs which certainly had an impact on our living standards as a family.

That we are headed for promising times in the near future is clear from the decibels of modern technological advancements, medical development, and a great deal of financial support alongside the availing of medical infrastructure concerning Hemophilia. Yet, despite these advancements, some underlying concerns can be taken into account for a better tomorrow.

A good start would be training other affected members of the family on how to handle their hemophilic siblings such as administering prophylaxis, how to handle bleeds and even ways of treating nosebleeds. These can be made through online training and education amongst other channels.

Along awareness lines, in my view, the hemophiliacs themselves besides their siblings can be a conduit for mass awareness of hemophilia and its effects. This is because they are the ones affected firsthand. Armed with the knowledge they have acquired over the years; they stand a chance to be upfront in the battle of ending deaths accruing from this bleeding disorder. Perhaps this is the surest way to bridge the gap between the already known and unknown hemophilic in the whole world. Who knows?

Furthermore, the provision of guidance and counseling to the affected family members will also go a long way in the reduction of depression caused by constant witnessing of the agony that hemophiliacs go through. To be frank, as a father, I have seen the effects of agony spread all over the family members whenever one of the hemophilic kids gets injured or gets hospitalized.

Moreover, with the utilization and availability of technological instruments such as laptops and smartphones, families can now be virtually assisted whenever an injury occurs without necessarily visiting the hospital. 

In retrospect, comparing how life is now with long before we got enlightened, I consider it a blessing to have known the bleeding disorder at the opportune moment. Life now is snug and above all, knowing that my two hemophilic sons are going to readily access treatment gives me a sense of serenity. Many thanks go to all organizations and friends that stood by our family in combatting hemophilia and its effects. Surely, the synergy that has been in play has borne fruit in the long run!