FAiTh (Fight Against Thalassemia) is a Patients & Parents Association. It is a non-profit, non-governmental organization that aims to create awareness among thalassemia patients, their parents and the general public through active support, advocacy, assistance and treatment. Every second, someone in this world needs someone to help a step of the way. For thalassemics, it is a quart of blood or an ounce of medicines.
Thalassemia is a genetic disorder of the blood and specifically, the hemoglobin protein, which is contained in the red blood cells and is responsible for carrying oxygen to all the tissues and organs of the body. Thalassemia belongs to the wider family of hemoglobin disorders. Approximately 7% of the world population is a carrier of a severe hemoglobin disorder, including thalassemia. Thalassemia is usually characterized by anemia (low red blood cells), bone disorders, enlarged spleen, yellowish skin, and slow growth among children. It is typically diagnosed by blood tests including a complete blood count, hemoglobin electrophoresis, and genetic tests. Diagnosis may also occur before birth through prenatal testing. Its treatment includes regular blood transfusions & iron chelation. In Pakistan, an estimated number of 5000-6000 children with β-thalassemia are born every year.
The history of FAiTh goes back to Salman Mehmood who being a thalassemia major patient himself was not only a part of the thalassemia community but was also at the forefront of fight against this genetic disorder. He was the founder of first ever Thalassemia awareness portal of Pakistan (www.thalassemia.com.pk) which was initiated in 1999. Salman had a special place for this cause in his heart as he had earlier lost his brother to this genetic disorder. He, therefore, strongly aspired and desired to save the coming generations from thalassemia. He made continuous and relentless efforts to get the Thalassemia Prevention Bill passed by the National Assembly of Pakistan. However, in an ironic coincidence, the bill got passed in Khyber Pakhtunkhwa assembly shortly before his last breath in October 2009. Ayesha Mehmood, the current CEO and President of FAiTh has taken up the cause of his brother after his death and has been leading the thalassemia patient’s community from this very forum. She has been a symbol of hope and courage for everyone and the thalassemia patients have always looked up to her as to how to live one’s life with grace, dignity, and passion.
Today, FAiTh is the torch-bearer of thalassemia patient’s advocacy and support. The association is not only fighting a war of survival on behalf of the affected but is also a living example of resilience. The association takes pride in taking forward steps for patients more than the medical assistance, like helping them with education, imparting skills, encouraging patient interactions, following up pursuits, sharing their happiness and empowering them as responsible individuals of the society. In addition to that, FAiTh strongly condemns and raise voice against the sub-standard treatment protocols, malpractices, patients’ rights, medical ethics, lack of facilities on various print, digital and social media platforms.
FAiTh also conducts free medical consultancy sessions for the patients, especially in the fields of hematology and endocrinology and iron-chelation. FAiTh also runs a Drugs Donating Society benefiting hundreds of patients. Furthermore, it has endeavored to bridge the gap between the patients and supporters. FAiTh Patient Support Programme also helps the patients and their guardians to take better care of themselves, as to how they can maintain their hemoglobin and ferritin, as well as about prevention, spreading awareness, helping themselves & others. Today, FAiTh has a number of 400+ registered patients and parents connected through support, empathy and resource-sharing (Alhumdulillah). More than any other thing, we strive and hope to act as a light house of hope for all the thalassemia patients throughout the country.