Six year-old Maryam slowly drags her bare feet on her way to school, carrying a bag with books from the Tunisian Association for Patients with Hemophilia (TAPH). She clings to her mother’s hand as if she is clinging to life itself and she keeps her eyes on her feet, especially the bandaged toe. Desperate for a pair of shoes, and from a family too poor to buy medicine, she knows that a cut from broken glass would cause her to bleed to death and the bag would be useless.
Mayam has hemophilia, a disease discovered ages ago when it affected kings and emperors.
Six year-old Maryam slowly drags her bare feet on her way to school, carrying a bag with books from the Tunisian Association for Patients with Hemophilia (TAPH). She clings to her mother’s hand as if she is clinging to life itself and she keeps her eyes on her feet, especially the bandaged toe. Desperate for a pair of shoes, and from a family too poor to buy medicine, she knows that a cut from broken glass would cause her to bleed to death and the bag would be useless.
Mayam has hemophilia, a disease discovered ages ago when it affected kings and emperors.
Queen Victoria developed this malady and then passed it on to many kings and queens of Germany, Spain and Russia as they all descended from the same dynasty.
They all died of it because there was no cure.
Since then, hemophilia, or the king’s illness, spread. Even though it is classified as a rare illness, it has hit the poorest people and caused human tragedies, like Maryam’s.
The poor left to die
Hemophilia is a hereditary disorder in the blood that hinders the clotting process. It causes non-stop bleeding, especially at the level of the joints, muscles and organs. There are 400,000 patients all over the world, according to World Health Organization. In Tunisia, according to TAPH, there are 1,000 reported cases with many more unreported ones.
Maryam and her brothers, who both are afflicted, are from Gafsa countryside. Their unemployed father can’t provide for his family let alone regularly buy expensive medication. They are also challenged by the 380 kilometer-trip to Tunis to get to TAPH.
Hemophiliacs with social insurance can get access to medicine, while others survive on small assistance from TAPH.
Ahmad Ajami, the father of a twin with hemophilia, says: “I knew a little about the disease since a relative died of it at the age of 30. I didn’t imagine that it was hereditary and that it would be transmitted to my sons until one day they fell on the ground when they were only a year old. They bled very much, even transfusion didn’t work. Then we knew about the disease,” he added sadly.
Ajami described his suffering as a “long journey” that exhausted him and his family members who have helped him a lot especially financially.
Ajami says he must go to TAPH or other hospitals in the capital to obtain the medicine and his children must remain under observation for four days, which means leaving his job to look after his children. “A lot of patients give up and stop treatment for these reasons. They either take the pain in silence or die, and a lot of them are children,” he explains.
“The government doesn’t assume its responsibilities and considers treatment expenses a heavy burden, due to high costs of equipment and medicine, so the poor are left to die,” he said.
Families who have the disease are avoided, especially when it comes to marriage. Many prefer keeping their illness a secret and not to be treated so they stay in bed when bouts come.
“When my brother wanted to get married”, says Ajami, “his fiancée insisted that he undergo all the needed tests.”
Preferring anonymity, a graduate says it is ironic that kings’ children died because there was no cure and today, although there is one, the poor can’t get it. “As if it was a curse of the kings’ deep-rooted grudge against this class.”
