Mohammed Nurul Islam is a father that beams with pride when he talks about his son and daughter.
This pride in his family and in his work is something he has worked very hard on for many years because having a son with sever hemophilia A and a daughter that is a carrier is not easy in a country where people can be shunned for having a bleeding disorder.
Even though Bangladesh has made great strides in the last few decades in terms of social, political and economic improvement, but when Islam first found out his son had a bleeding disorder there was nowhere for him to turn to for care, let alone information. As hemophilia is rare, those that have it in Bangladesh often choose to keep their diagnosis a secret for fear of becoming social outcasts. Instead of remaining quiet, Islam decided to stand up and take an active role in the community.
“At that time there was no diagnostics facilities in Dhaka. At that time there was no factor, there was no cryo (cryoprecipitate), only fresh frozen plasma. This is why I founded the Hemophilia Society of Bangladesh. We started with six hemophilia patients,” said Islam.
In March 1994, Islam established this patient organization in order to get his son the help he needed and to ensure that other parents like him had a place to turn when their child became diagnosed. He has made it his life’s goal to raise awareness about bleeding disorders to change the government’s attitude toward funding treatment for people and to educate the public on bleeding disorders so that those living with it do not have to hide for fear of being ostracized.
“In my case I am open to all. I am the founder of the society so everyone knows me,” he said. “But there is a social barrier. Those rich people don’t like to disclose that they have hemophilia and they treat outside. They don’t even go to doctors of our country because of marriage or other social reasons; it is really a big problem in Bangladesh.”
However with each passing day, Islam can see things are getting better for people in the community. Bangladesh has a long way to go to offering people proper basic care but treatment is getting to many who need it most and they are getting some social acceptance where before there was none.
In 2014, the WFH facilitated Bangledesh’s first women’s workshop for carriers, patients, their wives and women with bleeding disorders. You can help the WFH continue to empower women in Bangladesh. Visit www.wfh.org/donate to give your support.
Support the WFH and have fun too!
The upcoming festive season is a great time to get together with friends, family and your whole community, to raise awareness about bleeding disorders and raise funds for the WFH mission and have lots of FUN too!
Learn more at www.globalfeast.org