Warriors and Survivors -47

 

 "Thalassemia Major"

Children Cancer Stories by Rukh Yusuf - Blog # 47

 

I am Rukh Yusuf, Clinical Pharmacist, also specialized in Total Parenteral Nutrition and Bone Marrow Transplant. I have been working in Pediatric Oncology unit of a public hospital for several years. The mission of this blog is to bring to you the real-life stories of child patients suffering from cancer. Cancer is still a difficult disease to handle and treat. However, when it strikes the children, some so young that they cannot even speak, their agony is beyond expression and words. Let us pray especially for children suffering from cancer for early and complete remission. May Allah shower His Merciful Blessings upon them. Aameen.

Zeba is 16 years old girl who has grown elder receiving thalassemia treatment. She is from Kashmir. She was diagnosed as having thalassemia major when she was less than five years old.  Not only Zeba but her elder brother was also suffering with thalassemia major. Poor father who is laborer, had been managing the treatment since more than a decade and still doing efforts for the life of his child.

Zeba’s brother passed away two years ago due to complications caused by thalassemia. Zeba too is striving hard to win this battle, but her victory seems difficult due to financial and social circumstances. Most of us know that thalassemic patients need frequent blood transfusions resulting in iron accumulation in different organs, mainly heart and kidneys. This excess iron is lethal, and iron chelators are being used to remove extra iron from body. Iron chelating agents are lifesaving medicines for any thalassemic patient.

It is sad reality that thalassemic patients do not survive longer but when they do and luckily reach teenage, they are refused treatment from a child unit being above the age of children range.

Zeba has also been refused because she is above child’s range. Poverty and children’s diseases have made her father older earlier. He does not have a fixed income source. Although Zeba gets blood transfusions from some charity institutes but she needs a regular supply of iron chelator medicines which are not so costly, but Zeba’s father cannot afford to buy. He hardly manages to travel from Kashmir to Lahore.

He is so simple and innocent at this old age with so many wounds on his heart, specially death of young son and brutal disease of a young daughter since more than a decade.

Punjab Government is already doing great, we have a very large Thalassemia center which is providing free treatment facilities since long. But when these children go to teenage, they don’t have a facility for treatment and free medication. Most of the families are poor or they get poor while fighting this battle. There is need of a center or clinic/program which can provide free medications of thalassemia major patients above 16 years or older. So that some of fortunate or may be unfortunate ones who live till the age of 16 or above can have their treatment from these units or centers. Government or philanthropists should come forward and make this happen to facilitate these miserable lives. Pakistanis are no doubt most generous and full of philanthropists.

May Allah help us to be able to help others and to do something worthwhile for the suffering of others. Aameen

I pray for healthy and smooth recovery of Zeba and all our warriors, and healthy life for all our survivors May Allah bless all those families who are fighting this cruel battle. Aameen

May Allah help us to be kind to patients and attendants and grant us courage to keep ourselves strong and updated.

 

 

Note: Names have been changed to protect identity