Scientists are working progressively to find a permanent cure for haemophilia, a bleeding disorder, Dr. Yaa Gyamfuah Oppong-Mensah, a Pediatrician at the Komfo Anokye Teaching Hospital has said.
With an injury or surgery, affected individuals can bleed spontaneously, or excessively, she stated.
“Studies in both animals and humans have provided evidence that a permanent cure for haemophilia is within reach. Gene therapy which has a curative intent is currently under development and trials in the Western world,” Dr. Oppong-Mensah said.
Notwithstanding, she said the current standard of care for haemophilia in the country was to control or prevent bleeding episodes through factor replacement therapy, given by regular intravenous (IV) infusions.
Dr Opppng-Mensah said the KATH and the Korle-Bu Teaching Hospital offered comprehensive care to patients with bleeding disorders to improve their quality of life.
She said the earliest symptoms usually occurred after birth, bleeding from the cord, scalp swelling, and most importantly, prolonged bleeding after circumcision.
“An individual’s blood does not clot properly due to insufficient blood-clotting proteins (clotting factor) that help stop bleeding”, Dr. Oppong-Mensah, also a member of the Ghana Hemophilia Society told the Ghana News Agency (GNA) in an interview to mark this year’s World Hemophilia Day (WHD).
The WHD is an international observance day held annually on April 17 and instituted by the World Federation of Hemophilia (WFH) and the 2023 celebration is on the theme “access for all: prevention of bleeds as the global standard of care.
Dr. Oppong-Mensah said with the support of the Ghana Hemophilia Society other satellite centres had been established Sunyani Regional Hospital, Effia Nkwanta Regional Hospital, Sefwi Wiawso Municipal Hospital, Tamale Teaching Hospital, and Cape Coast Teaching Hospital.
“The disease is caused by a mutation in a gene that sits on the X chromosome. Males have one X and one Y chromosome (XY), and females have two X chromosomes (XX). Hence males are affected when they inherit a chromosome from their mothers”.
“The disease consequently affects more males than females, as males have only one X chromosome. A female carrying the defect on one of her X chromosomes may not be affected by it,” she stated.
Dr. Oppong-Mensah added that “a carrier mother has a 50 percent chance of passing the faulty X-chromosome to her daughter, while an affected father will always pass on the affected gene to his daughters”.
“A son cannot inherit the defective gene from his father and haemophilia affects all races and ethnicities with an occurrence of one in every 10,000 births”, she added.
Martin Boakye, the Founder of the Ghana Hemophilia Society, a non-profit organization said the society was formed in 2009 and worked to educate and train health workers as well as advocated the needs and rights of people living with haemophilia.
Currently, the society has, in collaboration with the treatment centres, about 500 haemophilia patients in their database who are being supported in treatment and care, he added.
“The society through its enviable work has gained recognition and membership from the World Federation of Hemophilia, Canada,” Boakye stated.