When we suffer a cut or an injury and begin to bleed, our bodies get to work immediately to stop the bleeding. This is through the action of blood platelets and various clotting factors in the human body.
However, this is not the case for people living with haemophilia. Their bodies lack the necessary clotting factors to immediately stop the bleeding. For them, this means that bleeding can go on and on. Unfortunately, it can lead to death, if not treated.
Treatment plans for haemophilia include medication that promotes the clotting factors that are deficient in people with haemophilia. For such people, blood is essential in treating severe cases where there has been major loss of blood.
There are three types of haemophilia: A, B and C. Diagnosis for any of these is as a result of the body lacking clotting factors VIII, IX or XI, respectively. Clotting factors are proteins that work together to make a blood clot. This is according to the Kenya Haemophilia Association.
Haemophilia is inherited. Only one in every 10,000 people is born with the condition. As of 2018, there were approximately 5,000 Kenyans with the disorder, as captured in a Global Health Now article by H. Mcneish, dated 14th December 2018. This is one of the reasons it is considered a rare condition.
Therefore, most people either don’t know about it, or have only heard of it. Most first come into contact with it when someone they personally know has it. There is a need for awareness to ensure that one can act accordingly should they come across someone affected by the condition.
As well, a poor level of awareness is at the root of lack of systems and facilities to support individuals with the condition. Raised levels of awareness would help in many respects.
One, there would be deliberate efforts to determine the number of people with the condition. Two, with this information, appropriate systems and commensurate resources would be allocated to cater for people living with the condition. Three, with elevated awareness, those interacting with people with the condition can know how to respond in case the need arises.
It is noteworthy that the Kenya Haemophilia Association, and the Ministry of Health have trained their attention to this area, to assure that there is needed awareness and services for this segment of the population.
Haemophilia has a great impact on the lives of not only those affected but also their families and friends. This is in terms of the treatment plans and costs, as well as limitations in activities that haemophiliacs can participate in.
According to health experts, haemophiliacs are comparatively more susceptible to severe joint and muscle bleeds, which are mostly caused by physical activities such as jogging and running. The situation can be worse when bleeding is internal and hence not visible to the naked eye. Given that haemophiliacs bleed longer than normal, they are discouraged from engaging in such activities.
But how does one know that one has the condition? This can only be done through testing done by a
qualified healthcare professional. Indeed, it would be a great idea were every child to be tested for the condition when they are born. Those with haemophilia can then have their names in a national registry and those around such a child could be made aware of how to handle such a child.
It is important to note, however, that haemophiliacs can and do live normal lives, capable of experiencing all the joys of life, like those without the condition.
Furthermore, through the Kenya Haemophilia Association (KHA), in partnership with other organizations such as the Novo Nordisk Haemophilia Foundation (NNHF), the World Federation for Haemophilia (WFH) and various hospitals in Kenya, treatment is now within reach and is much more affordable.
Participating treatment centres include the Kenyatta National Hospital (KNH), Moi Teaching and Referral Hospital (MTRH), and a recently established centre in Mombasa, according to KHA.
As we gear up to the World Haemophilia Day on 17th of April, you can join the cause by helping to raise awareness of the condition and potential treatment among your peers. Such awareness will go a long way in meeting desired treatment outcomes for this segment of our population. You are encouraged to visit the Kenya Haemophilia Association website (https://www.haemophilia-kenya.org) for more information on how you can help.
It would also be helpful to book and donate blood at your nearest centre. This is because the donated unit may just end up saving a haemophiliac’s life.
Damu Sasa is an end-to-end blood services information platform built to aid in the effective management of blood services. Download the Damu-Sasa app from the Google Playstore to book donation appointments, make appeals for donations and receive health reviews. Non–android users can use the USSD code *483*277#.