Most of us who get a minor cut, we can just wash off the blood, put on a Band-Aid and we’re good to go. The same can be said about any bruises we get when we trip and fall. However, for some people, a simple cut or a bruise can be a life or death situation because of hemophilia.
Vinayak Nair spent most of his childhood in and out of hospitals. His average attendance in school was just 3 months in a year. Just six days before his board exams, Vinayak got admitted to the hospital for psoas bleeding. Hoping to be out in time for his exams, he was confined to the hospital for 33 days, to get the bleeding under control.
13-year-old Farooque lives with his family in Mumbai. He used to bleed from the knees and hand joints frequently. The pain and the bleeding make him miss school for days together. Without proper treatment, Farooque is at a risk of becoming disabled.
Saugata fell on his face and bit his lips when he was just three years old. The bleeding didn’t stop for hours, creating panic all over. Gowing up, Saugata would often wake up with heavy mouth bleeds, soaking his sheets in blood.
The one thing that Vinayak, Farooque and Saugata all have in common? All of them suffer from hemophilia.
So, what exactly is hemophilia? Hemophilia is a bleeding disorder where a person’s blood does not clot properly, due to a deficiency in some clotting factor. As a result, the person is at a high risk of excessive bleeding. When a hemophiliac undergoes a surgery, there is a greater chance of internal bleeding which can be a deadly situation. Even if they sustain smaller injuries, hemophiliacs may bleed to death if they don’t get immediate help.
Hemophilia is a rare and serious disorder, affecting 1 out of 10000 people around the world. While the number of people diagnosed in India is much lesser, it’s important to know that most of the people who have such bleeding disorders are often left undiagnosed and untreated, due to a limited awareness about the disease. In the majority of the cases, people simply do not know the seriousness of the issue.
The good news is hemophilia is mostly genetic and can be easily diagnosed if there is a family history of the condition. Even if there is no family history, a simple blood test can confirm the diagnosis and its severity. So keep an eye out for those nicks and bruises on your body. Otherwise, hemophilia may be discovered too late, after an injury or surgery, which can be fatal.
Currently, there is no long-term cure available. But as with everything in science, tremendous research is going on, and it’s only a matter of time before scientists find a permanent solution. Until then, the treatment for hemophilia is done by replacing the blood clotting factors, depending on how severe the condition is.
Since 1989, the World Federation of Hemophilia (WFH) has celebrated World Hemophilia Day on April 17th. This date was chosen to honour Frank Schnabel, founder of WFH, an organization dedicated to improving the lives of people with hemophilia and other bleeding disorders.
The theme for this year’s World Hemophilia Day is ‘Sharing knowledge makes us stronger’ – an apt one, since not many people are aware of the disorder. Understanding the symptoms and health risks of hemophilia is the first step in understanding what a hemophiliac goes through, and how to make their life better.
Today, Vinayak, Farooque and Saugata are all registered with Hemophilia Federation India (HFI) and are getting regular treatments, allowing them to have a comfortable life.
If anyone in your family shows signs of bruising easily or bleeding too much after a small injury, get them tested today. With a simple blood test, you can help them get the proper care and treatment, giving your loved ones a near-normal life without major complications.