HIV/AIDS and Persons with Hemophilia (PWH)

Blood or blood products are the only means of treatment of Hemophilia. While today virtually safe blood products, such as factor concentrates, are available, 30 to 35 years ago infusion of whole blood, Fresh Frozen Plasma (FFP) or lyophilized cryoprecipitate were standard treatment for Hemophilia.

HIV/ AIDS and hepatitis were unknown at that time the screening of blood for blood for blood borne infection was mostly non-existent. This was the time when maximum Hemophilia patients got exposed to HIV and Hepatitis viruses. In India, even today, the high cost of AHF deters most PWH from getting this treatment and they tend to depend on infusion of unsafe, wet blood products mentioned above. These necessarily expose them to blood borne infections such as HIV/ AIDS and Hepatitis. If a PWH contracts any of these infections in addition to his inherited disorder, then the resulting complications can be extremely damaging both physically, emotionally and financially.

There are no rules to living with HIV and PWH who have tested HIV positive say that living with HIV is not that much different than living with Hemophilia. Both are lifelong condition that require constant care and management and can cause new complications in day-to-day living. These could mean dealing with sexual partners, friends, neighbours, schools or employers and preparing oneself for eventualities such as sudden illnesses, unemployment, and emotional trauma and so on. The important thing is to regain control of life despite HIV and Hemophilia. PWH can make few simple changes in their life style in order to lead a healthier life.

They should avoid alcohol, cigarettes and non-prescribed drugs as these cause further interference in fighting infections. Instead they should eat a healthier diet that includes fresh fruits, vegetables, grains and properly cooked meat, chicken fish etc. that nourish the system. They should also follow regular sleeping habits. Exercise should become a regular activity. Walking and swimming are especially helpful. These build up a strong muscle tone that also helps in controlling bleeding episodes in Hemophilia. Following healthy hygienic habits such as regular bath, not sharing shaving blades, tooth brushes are particularly important in order to avoid opportunistic infections that can be transferred from others to them.

Too much stress can be harmful therefore relaxation techniques such as mediation are recommended to keep stress at bay. These can be in the form of group therapy or one may develop his personal relaxation agenda that can be practiced from home. This may include sitting quietly and relaxing muscles. Following tertiary hobbies such as painting or singing or playing indoor games such as chess, carom etc. also help in relaxing. Although getting angry, depressed or denying what is happening to one’s body are natural responses to HIV and Hemophilia yet it is worth remembering that peaceful acceptance of the situation is also valid a response. Emotions can vary in intensity. Grief, tears and sorrow are all part of living with HIV. Psychologists however, see even these as positive healing emotions and recommend that while under pressure to live with illnesses one should not forget the love, happiness and humor that life bring. HIV reproduces itself very quickly, making billions of new viruses every day. Because the virus often makes mistakes when copying itself, each new generation differs slightly to the one before. These tiny structural differences are called mutations.