In Pakistan, there are hundreds of children who suffer from different diseases and Thalaseemia is one of them.
Thalassemia is a group of inherited blood disorders that affect the body's ability to produce hemoglobin and red blood cells - patients have a lower-than-normal number of red blood cells in their bodies and too little hemoglobin. In many cases the red blood cells are too small. The bone marrow of people with Thalassemia does not produce enough healthy hemoglobin or red blood cells, which causes anemia and fatigue, because the body is short of oxygen. In more severe Thalassemia cases, the patient's organs may be damaged; there is restricted growth, heart failure, liver damage, and even death
Childern born with this syndrome major are normal at birth but develops serve anemia during their first year of life. Facial bone deformities, fatigue, growth retardation, shortness of breath, pale skin and splenomegaly are some of the major symptoms of this disease.
The absence of an adequate, effective, safe and affordable National Blood Transfusion Service is an important health system problem that Pakistan faces today. Over 50% of under privilege mothers have hemoglobin level less than 10 g/dll. The same is true of children below 5 years of age, 85 percent of whom have hemoglobin level below 10 g/dl Creation of blood –intensive specialty centers for Cancer Surgery, Chemotherapy, Radiotherapy, Renal Dialysis, Renal Transplantation, Cardiovascular by-pass Surgery, Thalassaemia, Leukemia, Hemophilia etc., have all led to an even greater need for blood and blood products.
There are treatments of all these but it requires a lot of budget for one patient. In this regard Sundas Foundation is providing their services and curing the kids who are the victims of it.
It is the pioneer in voluntary healthy blood transfusion service which is working in many districts of Pakistan like Lahore, Gujranwala, Faisalabad, Gujrat, Sialkot and Mirpur. The center was set up in 1998 with the aim of supporting the poor sufferers of Thalassaemia, Haemophelia and Lukemia, mainly children. The Founadation provides medic ines blood and blood products screened for all fatal diseases like Hepatitis B, Hepatitics C, HIV and PPR without any charges. Today it is one of the biggest foundations who is working on such children and giving them a new life. Sundas foundation mission is to support the poor and needy patients despite its limited resources.
Through different blood camping, foundation collects blood for the patients from schools, college and cooperate sector. Right now there are up to five thousand patients registered in foundation and in Lahore center there are thousand patients. Almost 20,000 per child are required for the treatment.
While visiting the foundation, we found many small kids who were the victims of thalassemia and Hemophillia and they were under treatment. This cure major involves regular blood transfusion after 15 to 20 days and folate supplents. Bone marrow transplantation may help treat the disease in some patients especially children.
Nafeez Rana, director marketing and fund raiser talks to Sunday Plus about the working of Sundas Foundation and how they treat the patients.
“We are providing our services for patients of Thalassemia& Hemophilia. Hemophilia is a disorder of blood-clotting system. There are several types of hemophilia. All types can cause prolonged bleeding. If you have hemophilia and you have a cut, you will bleed for a longer time than you would if your blood clotted normally. It is a lifelong disease, but with proper treatment and self-care, most people with hemophilia can maintain an active, productive lifestyle.
Our aim is to eradicate these diseases. For the very first time in Cyprus, it was diagnosed but soon it was decimate because a bill was passed in the assembly that before getting married, the couple has to go for the test of thalassemia. If one person was this deficiency then they can’t get marry. In Pakistan, this ailment came very late but the ratios of patients have been increased now.” Said Nafeez
Sundas foundation is trying their level best to eradicate this but this is not possible without the help of government. “We called Sardar Ayyaz Sadiq Sb, Salman Refeeq sb, MNA, MPA’s and Islamic scholars to our center and showed the treatment process and told them how much a kid has to bear a pain. We told them that through a law we will be able to finish this disease. They assure us that they would make an effort for passing the bill but till now we are on hope for it,” said Nafeez.
There should be proper research institutes who can aware people about this disease through different campaigns and seminars. With the support of government and health centers it can be controlled and we can have save a safe and healthy generation.
In Pakistan where literacy rate is very low, people are unaware of such disease which can put their kid in dismal situation. Being a responsible citizen, it is our duty to donate such organizations who saves life of small kids and fighting with diseases voluntary.