Establishing centers for providing comprehensive care of hemophiliacs is high on the agenda of the health ministry, said Dr. Razieh Hantushzadeh, who heads the ministry’s hemophilia department.
“Fundamental measures have been taken and we are working on the structural format of each center,” ISNA quoted her as saying.
Hemophilia is a group of hereditary genetic disorders that impair the body’s ability to control blood clotting, which stops bleeding when a blood vessel is broken. Like most recessive sex-linked X-chromosome disorders, hemophilia is more likely to occur in males than females.
Lack of access to medical and clinical care is a major crisis for hemophilia patients. They are constantly forced to commute back and forth to a large province or city to receive special care. The new centers will provide them easy access to medical and clinical care and lighten a part of their daily challenges.
Hantushzadeh said hospitals are quite efficient in offering factor (such as VIII and IX) infusion therapies to patients; however, care for post therapy recovery is lacking. She believes that hospitals should not wait for a hemophiliac to walk in, but must take preventive action by performing periodic checkups of patients.
The hemophilia expert also said that hepatitis-stricken hemophiliacs will receive further support and be provided with medical care in the current year (started March 21).
“A section of the patients have grown resistant to the existing drugs, and annual medical care for patients with hepatitis costs 1.1 and 2.2 billion rials each ($33,000 to $66,000); we hope to provide assistance through effective medication.”
A hemophiliac does not bleed more intensely than a person without it, but can bleed for a much longer time. In severe hemophiliacs even a minor injury can result in blood loss lasting days or weeks, or even not healing completely. In areas such as the brain or inside joints, this can be fatal or permanently debilitating.
