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  April 17, 2012

Chitral Times Detail

In The Name of ALLAH The Almighty


HAEMOPHILIA—Understanding psychosocial insights and the remedy

By: Dr.Saqib Ansari (Consultant Pediatric Hematologist) and
Miss Salima Khowaja (Clinical Research Associate)

Haemophilia is an inherited X-linked bleeding disorder that results in difficulty in hemostasis that is the blood takes more time to clot than in people without disease, after any injury. They usually present during the first year of life, particularly when child start crawling or bleed excessively after circumcision. There is a history of excessive bleeding found in maternal uncles of these patients. The females are carriers of the disease and pass the disease to the male child where there is 50% chance of conceiving a male hemophiliac child at each pregnancy.

Haemophilia not only pose physical and economic burden, but also have psychological impact on the patients and their families. Carrier women may transfer the gene to her child, her female offspring have 50% chance of being carrier while 50% chance exists in male children who may become diseased. Diseased son specifically becomes reason of blaming for her mother as he has to suffer with the implications throughout his life. However, girl only tends to transfer the carried gene to the next generation. It associates stigma with this condition and the carrier mother is left with guilt her whole life. Nevertheless, around 30% haemophilics do not have their mothers as carrier but they get their genes somehow spontaneously mutated. Researchers reported at Hemophilia World Congress 2010 that preliminary results from an international survey revealed that “mother of these children diagnosed with hemophilia suffer feelings of blame and guilt for their child's illness” (Susman, 2010). Consequently, this results in the separation or divorce of that woman. This has also been seen in the case of van Willebrand disease, another common bleeding disorder; however, both parents are carrier in this case. Due to lack of awareness, man tends to blame the women for it as in the case of hemophilia. Such cases have also been evidenced by us in our practice in Pakistan. Where, carrier women have been seen to be divorced just at the cost of having a child with hemophilia or van Willebrand disease. Stigma has been found particularly in the countries with illiteracy regarding genetics where women are usually blamed for producing offspring with genetic abnormalities. Thus, disease status, associated stigma and inactivity during daily life activities usually contribute to the psychological burden.

Haemophiliacs have found to have anxiety, depression, obsessive compulsive traits, somatic characteristics, low self-esteem and drug dependency (Fakhari and Dolatkhah, n.d.). According to WHO, degree of severity of the disease is found to impact the levels of anxiety and self-esteem. This can be due to having weak coping mechanisms. Suffering patients sometimes face difficulty in managing their illness and parents suffer with stress while managing children with genetic abnormality. Moreover, it can affect their treatment compliance as well.

Physicians are almost the first one whom the patients and their family confront and consult for the symptoms of the disease. And, this is the time where the diagnosis is made most of the times. This is the right time to educate parents about the bleeding disorder, their mode of inheritance along with the role of genes. The sound awareness created at this point can save many relations and can help parents manage their children with the course of life. Besides, they also need psychological support. Counselors and psychologists should help the carriers as well as the patients in dealing with anxieties and fears. This can be done by providing couple and family counseling in order to motivate them to enhance their positive coping skills. According to Casey and Brown (2003),“child coping, parent coping, social support, adaptive functioning treatment compliance, and illness severity must be considered to better understand and influence overall psychological functioning ” (Fakhari and Dolatkhah, n.d.).


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