Should mothers of hemophilia kids like me run for ‘rashan’

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KARACHI: Tell me should mothers of hemophilia kids like me run for “rashan” being distributed by philanthropists, NGOs or beg for treatment to save lives of our kids. Why there is no treatment for our kids in government hospitals like other diseases? Our kids are losing their joints and dying in front of us and we are so unfortunate mothers who cannot save them just because of not having so much money for treatment, says a Press release.
This was a miserable story shared by Mrs. Quratul Ain, mother of a five years old only son master Ayan who is suffering from hemophilia-A, a blooding disorder caused by deficiency of clotting factor 8 and 9. He is now also suffering from inhibitor antibody complication leading his body resistant to dry factor injection normally administered hemophilia patients to stop their internal or external bleeding.
She was sharing her dilemma with journalists during a press briefing organized by the Hemophilia Welfare Society Karachi (HWSK) at its treatment centre located in Nazimabad locality of Karachi. She was accompanied by her ailing son master Ayan and husband Mr. Muhammad Saqib, a salesman.
Raheel Ahmed, a hemophilia patient himself, founder and president of HWSK, Shahid Dawood, secretary general, Fakhar Alam Zaidi, founder and treasurer, and Dr. Mushtaque Memon, a senior medical officer at this treatment centre also addressed the press briefing.
Master Ayan mother narrated the story that one morning he was awaken with severe internal bleeding in his elbow joint one and a half year ago, and blood pressure was so high that it started travelling towards his heart and lungs. “With the timely help of hemophilia welfare society and Indus Hospital, Ayan was survived but his treatment could not be continued due to non-availability of funds for purchase of dry factor concentrate. Due to which he is still suffering and his elbow has developed stiffness,” she told.
“During this treatment, his body has developed resistance against normal dry factor injection which is used for hemophilia patients to stop their bleed. Now his bleeding can only be stopped with other bypassing agent injection and cost of such one injection is 71,000 rupees each mg. While doctors have suggested one mg dose in every eight hours for seven days which will cost 14,91,000 (1.491 million) rupees initially and this therapy can be extended further,” helpless mother told.
Dr. Mushtaq Memon told that hemophilia is a hereditary bleeding disorder, in which patient does not have natural clotting factor in blood by birth. “Hemophilia kids suffer from internal or external repeated bleeding in routine life and this bleeding cannot be stopped until anti hemophilia injection is not administered to them. This bleed can happen due to any minor cut, bruising or without any reason internally. Without adequate treatment many hemophiliacs die or physically deformed before they reach adulthood, he told.
Raheel Ahmed told that there were 20,000 patients of hemophilia in Pakistan including more than 6000 from Sindh province alone. “We have registered over 700 hemophilia patients so far and helping them in treatment by most needed dry factor injections and plasma as secondary option to save their lives,” he said.
“This injection is not manufactured in Pakistan nor government imports it for patients. Cost of one such normal dry factor injection is over 10,000 rupees while cost of bypassing agent injection is over 71,000 for per one mg if patient body develops antibody against earlier one. A hemophilia patient requires 10 to 12 normal anti hemophilia injections in a month like three times meal, he explained.