Overcoming Hemophilia: My Journey from Misdiagnosis to Advocacy

Efad Safi islam

I am Efad Safi Islam, a hemophilia patient from Bangladesh and a student of the University of Dhaka. I am currently working as a youth member of the “Hemophilia Society of Bangladesh”. Today I am going to share my story of being a hemophiliac.

Life as a hemophiliac was never easy for me. But also, it was never too hard. After my birth, me and my family faced a lot of problems because my family did not know how to manage and treat hemophilia patients as there is no other hemophiliac in my family.

When I was only 3 months old, a bleed occured on my right chest. As I was only three months old, I couldn’t express my pain. I cried all night and all day in pain. My parents took me to a local doctor and he prescribed some antibiotics and painkillers. I didn’t get any specific treatment and after suffering for almost a week, I recovered.

Another incident took place when I was 8 months old. there was a severe bleeding in my right elbow muscle. Some superstitious people told my parents that my shoulder has been dislocated. So my parents took me to a woman who was said to know how to fix dislocated shoulders. When my parents took me to that woman, she stretched out my hand. And how much that does that pains only a hemophiliac will understand. And as I didn’t get any kind of proper treatment, I had to face that kind of pain 10 to 12 times a year. This continued for almost 1 year.

When I was one year old, a Japanese doctor first suspected that I could be suffering with hemophilia. He did some tests and we found out for the first time we found out that I was suffering with hemophilia.

And after that, my life started to change. I became a member in that “Hemophilia Society of Bangladesh”. And from there, we got guidance about how to get treatment and how to manage patients with hemophilia. By the grace of God, I am now living almost a normal life.

I think the PRICE-M ( Protection, Rest, Ice, Compression, Elevation and Medicine) treatment helps a lot in the cases where factor concentrates are not easily available. Thanks to the “World Federation of Hemophilia”. Under their humanitarian aid programs, they are sending factor concentrates in those countries Where factor concentrates are not very available. Which comes as a relief for the hemophiliacs of those countries. Good job, WFH.