World Haemophilia Day: Patients share the ordeal of living with the disorder
Haemophilia is a bleeding disorder that affects the blood’s ability to clot. Typically an inherited condition, it is caused by a deficiency in one of the blood clotting factors
“Losing milk teeth as a kid was a nightmare, bleeding would not stop for days. Due to poor treatment, I had to spend teen years in a wheelchair. My parents discouraged me from further studies due to fear of injury or wound that may incur huge treatment expense,” said Lokesh Kumar, a 35-year-old haemophilic patient named from Nabha, Patiala, during the Haemophilia Day event at Christian Medical College and Hospital. He added that he cannot travel by public transport as any sudden jerk can induce non-stop bleeding, internally and externally.
The event aimed at raise awareness about recent advances in haemophilia treatment.
From going to bed and waking up with a deformity, not being able to ride public transport to avoid injuries, having bones fragile to even be able walk independently, dropping studies and passions due to fear of expensive treatment, to fear of contracting HIV AIDS from contaminated blood transfusion are few of the many difficulties that haemophilic patients have to go through on a daily basis.
Haemophilia is a bleeding disorder that affects the blood’s ability to clot. Typically an inherited condition, it is caused by a deficiency in one of the blood clotting factors. The severity of haemophilia can vary depending on the reduction of clotting factor.
“I used to crawl like kid until 5 years ago,” said 27-year-old Abhishek Rana, a haemophilia patient from Jagraon. Narrating his ordeal, he said “I have spent endless nights sleeping in a seated position to prevent internal bleeding. People around us find it hard to believe that we get internal wounds by turning sides while sleeping. Sometimes, we get two factors injected in a week to stop bleeding, each costing around ₹15,000 in private hospitals.”
People with mild haemophilia may experience bleeding after injury or surgery, while those with severe haemophilia can experience spontaneous and life-threatening bleeding in joints, muscles and internal organs.
Besides the pain brought by haemophilia, patients are often subjected to social ridicule. Several women, carrying of haemophilic genes, are considered “unfit” for marriage because of the stereotypes around family planning.
“I was married in 2018, my wife knew about my condition and in 2019 we welcomed a son together. But shortly after that, my condition worsened and I lost ability to walk. My wife divorced me and also took my son away in spite of the fact that I could support my family financially” said 40-year-old patient Prabhjot Singh.
“It’s because of the treatment at CMC that I am fit enough to walk again but I have lost my son and wife. There needs to be more awareness about the condition. People should know that this treatable and they should have empathy for the patients” he added.
Dr M Joseph John, head of clinical haematology department, said, “We have been taking initiatives to spread awareness about haemophilia for 13 years. At CMC, we provide patients with comprehensive care that helps in rapid recovery. Everyone must know that haemophilia is treatable and early diagnosis can help patients in leading a normal life. Pre-natal tests must be performed in cases of family history of haemophilia, this will help in early detection, giving the parent a right to choose further course of action.”
Dr Amarjot Singh Gill, associate professor, department of physiotherapy talked about the importance of physiotherapy in haemophiliac patients. He said “Regular sessions can help the patients significantly. Repetitive internal bleeding leads to joint deformities that can be prevented through proper physio guidance.”