The emotional rollercoaster of a single mother who tragically lost all four of her sons to post-circumcision bleeding has finally found some closure.
After years of believing she was to blame and carrying the weight of guilt, she has discovered that her sons actually suffered from hemophilia, a genetic disorder that impairs the blood’s ability to clot properly.
Hemophilia, known as “the royal disease” due to its prevalence in European royalty, is caused by a mutation in a gene on the X chromosome. This disorder primarily affects males, as they have only one X chromosome, making them more susceptible to inheriting the faulty gene from their mothers. Females can be carriers of the gene without exhibiting symptoms, but they have a 50% chance of passing it on to their children.
In Ghana, over 500 patients have been identified and diagnosed with hemophilia, but the actual number of individuals living with the condition could be much higher. Symptoms of hemophilia include joint and muscle bleeds, easy bruising, nosebleeds, and excessive bleeding after minor injuries or surgeries. Post-circumcision bleeding is a common indicator of the disorder.
The best treatment for hemophilia is replacing the missing clotting factor through medication. In Ghana, there are two comprehensive Hemophilia treatment centers that provide care for patients. These centers were established with the support of the Ghana Hemophilia Society (GHS) and the World Federation of Hemophilia (WFH), which provides humanitarian aid to ensure patients have access to costly clotting factors.
However, many patients struggle to afford the necessary laboratory tests and medications needed for their treatment. The GHS has been advocating for the inclusion of hemophilia care in the National Health Insurance Scheme to improve access to care for patients. World Hemophilia Day, observed on April 17th, aims to raise awareness about hemophilia and ensure equitable access to care for all patients.
With increased government support and awareness, individuals living with hemophilia in Ghana can receive the necessary care and support to manage their condition and improve their quality of life.
