Reema's cosy world started falling apart from the day when she gave birth to a baby boy with haemophilia, a genetic bleeding disorder which prevents the blood from clotting properly. However, the worst was yet to come.
"Even as I was struggling with the emotional trauma, feeling guilty for my child's condition and learning the do's and don'ts for raising a haemophilic kid, the relationship with my husband was straining day-by day, finally leading to divorce. He blamed me for the faulty genes," recalls Reema who is now single-handedly raising the child which has its own challenges.
While Reema's marriage suffered because she was a carrier, Ahemedabad-based Nabila Hussenii's husband divorced her because she herself has a bleeding disorder. "Though my husband and in-laws were aware of my condition when I got married, they were not ready to take up the responsibility as I had suffered two bleeding episodes post-marriage," said Nabila, a software consultant.
Women are usually 'carriers' of the genetic mutation for haemophilia on one of their X chromosomes. Although men and women with bleeding disorders have similar symptoms, such as bleeds into joints and tissues, women can experience added complications during peak summers, menstruation, pregnancy, labour and delivery.
For instance, Preeti Doshi (50) from Bombay dreads summers as her nosebleeds unstoppable. However, unlike Reema and Nebila, she's lucky to have sensitive husband who empathise with her health problem.
"For most of the women in the bleeding disorder community, it is a double whammy. As a mother of haemophilic kids, as a wife and also as a sufferer herself, they have to go through tough times throughout their life," explained Gurmeet Khanna, Vice President (Finance) of the Hemophilia Federation (India) (HFI), an NGO working in the sector.
Caring for a person with haemophilia includes many challenges: beginning from identifying a bleed to administering treatment to managing daily struggles. They are living life on the edge, Khanna summed up their travails. Her observation was echoed by Reema: "Every time my kid bleeds, I hold my breath to see if he will survive. It's scary. I worry that my child might literally lose his life. Immediate medical intervention is answer".
The missing clotting factor is injected into the bloodstream using a needle. Bleeding stops when enough clotting factor reaches the spot, that is bleeding. Delayed treatment can lead to disability or even death.
However, with adequate treatment and care, people with haemophilia can live perfectly healthy lives. Worldwide, an estimated four lakh PwH and only 25 per cent receive adequate treatment. India is estimated to have above 1 lakh PwH; just around 18,000 are enrolled with the HFI which is helping them with expensive drugs and medical intervention. Around 80 per cent remain undiagnosed or are fending on their own.
Khanna said that the women in the community are victims of domestic violence too as families are either unaware of the disease or stressed out due to financial burden.
"As the general public is clueless about the bleeding disorder, the community particularly women face discrimination, stigma besides apathy. Our women cell has been regularly holding workshops and rep sessions with them where they share and learn from each other's experiences," Sonal Sakariya, HFI women group chairperson pitched in.
Richa Mohan, a Clinical psychologist and Director of Empowering Minds, an NGO observed that many in the community prefer hiding the deficiency, some fear it hurting marriage prospects and others hate the questions. "But we advise them to be empowered, marriage or not. It is important for the affected family to disclose the condition to the family where she/he is getting married. This will save post-marriage embarrassment and bitter moments," she said.
Dr Nita Radhakrishnan, IJAssistant Professor at Department of Paediatric Haematology Oncology at Noida based IJSuper Speciality Paediatric Hospital talked about various medical, psychological and social issues faced by the women.
"Undiagnosed bleeding disorder can often be disastrous as they lead to heavy menstrual bleeding, problems during pregnancy and childbirth, bleeding following surgical procedures and other medical problems.Some doctors are not familiar with bleeding disorders in women; thus many patients are diagnosed late. Such cases risk serious complications.
"Symptoms that demand further evaluation in women include heavy menstrual bleeding often causing anaemia, easy bruising, recurrent nosebleeds and history of joint or muscle bleeding and other severe bleeding," she added.
On emotional trauma, she said, "care givers can often feel stressed, overwhelmed, and burnt out at being unable to offer adequate treatment to child. Therefore, it is important for them to be positive and focus on self care too."
Dr Radhakrishnan also called for better education and sensitisation besides early treatment for children with bleeding disorders to make them lead better life. "Also detection of 'carrier' women can empower parents to make informed reproductive choices such as medical termination of pregnancy," she said.