Haemophiliacs Urged to Manage their Illness

Haemophiliacs are being urged to take a more active role in managing their own illness, so as to ensure a better quality of life.
Consultant Haemotologist at the University Hospital of the West Indies, Dr. Doreen Brady-West, told JIS News that persons with the condition need to be more proactive in order to push for more programmes targeting their needs.
Haemophilia is an inherited bleeding disorder that is due to the absence or reduced amount of a particular clotting factor, and mainly affects males.
Dr. Brady-West’s appeal comes in the wake of the observation of World Haemophilia Day on April 17, which will focus on the theme, ‘Improve Your Life: Physical Therapy’.
She also encouraged persons with the condition to become members of the Jamaican branch of the World Federation of Haemophilia, in order to give a voice to their needs. “Make us know that you are there,” she implored, adding that the association wanted to know their needs.
As it stands now, the organization is mainly comprised of medical personnel who work in the field and a few persons living with the condition. “We do not have a lot of support from both haemophiliacs and their relatives.maybe some, but not a lot,” she acknowledged.
“Patients are just not motivated to join, because the level of care that they get is really not very high because of the cost factor [clotting agent],” Dr. Brady-West added.
Nevertheless, she is hopeful that haemophiliacs will see joining the association as a way to improve their condition. “In many developed countries there are strong organisations, where the patients are very vigilant and demand all sorts from the government,” she said.
Haemophiliacs, she pointed out, also had an important role to play in educating more persons about their condition.
“You need to educate the persons in your communities, Members of Parliament and even teachers, because very often the children [with the illness] need letters to take to their schools, so that teachers can understand activities that they can do,” she explained.
It is estimated that there are 400,000 people affected worldwide by the bleeding disorder, with some 75 per cent of them undiagnosed and untreated. In Jamaica, there are reportedly 300 persons living with the condition.