By Kamran Hashim / Rafiq Vayani
Young and energetic Jatin Kewlani was speaking exclusively with Biz Today on the topic of Thalassemia, which he feels is not getting the type attention that it deserves.
Thalassemia is more lethal then Polio and is also incurable, but comparatively Polio gets enormous amount hype and attention from official circles and media. Jatin Kewlani himself a Thalassemia Major has a very resourceful background and despite that he has to face many problems in arranging blood for transfusion.
Symptoms of Thalassemia start at an early age of two months age and some of the causes of Thalassemia is marriage between two minor Thalassemia patients which can result in Thalassemia major kid, another cause for Thalassemia can be genetic dis-order/inherited.
But before we proceed to create an awareness about Thalassemia, we need to know what Thalassemia is? Replying on this question Jatin Kewlani informed that; “There are two main types of thalassemia commonly known as Alpha thalassemia and beta thalassemia. To be more specific Alpha thalassemia is caused by reduced or absent synthesis of alpha globin chains and beta thalassemia is caused by reduced or absent synthesis of beta globin chains. In simpler terms Alpha thalassemia occurs when a gene or genes related to the alpha globin protein are missing, changed or mutated and similarly for Beta thalassemia occurs when similar gene defects affect production of the beta globin.
Beta thalassemia is a most common type of blood disorder worldwide and it has further declassified into three types known as Thalassemia major (also known as Cooley’s anemia), Thalassemia inter-media, which is milder than thalassemia major and thalassemia minor.
Speaking to Jatin Kewlani was like to reading an encyclopaedia on thalassemia and when asked about his services to community Jatin Kewlani replied; “it all started off during 2009 when I met a kid who was Thalassemia major and this kid wanted to die rather than to live because he didn’t want to see his family suffer just because of him, as arranging blood and then getting blood transfusions followed by expensive medicines around 20,000 ~ 35,000 was always very difficult and he would normally see his family members running from pillar to post to get things sorted out”.
Jatin registered his NGO Thalassemians Welfare Organization with the help of his Dubai based friend and partner Shoaib Azam who is married with kids and lives a very simple and normal life. Jatin’s main purpose of forming Thalassemians Welfare Organization was to create awareness for Thalassemia among circle & masses, to guide Thalassemia patients about treatments available in Pakistan or all over the world and lastly to help poor patients in arranging blood, arranging for blood transfusions, screening charges, medicines and iron chelaters.
Speaking on the complexity Thalassemia, Jatin said that; “in-case of Thalassemia Major blood transfusions depends from 10 days to a month and in-case of Thalassemia intermedia it may go as long as once in six months. At each blood transfusion, blood needs to be arranged which according to him the most difficult task and even more herculean & challenging task is to get screened blood”.
On a question, what measures can be taken to control Thalassemia? Jatin said; Government can play an important role in reducing Thalassaemia with conditions like mandatory Thalassaemia test before marriages and during initial periods of pregnancies. Nadra can also play an important role too for Thalassaemia detection. Furthermore Government can make a special free laboratory exclusively for Thalassaemia patients like Thalassaemia Centre in Dubai. Authorities should also curb pressurized marriages. Pakistan Thalassemia Centre by Pakistan Bait-ul-Mal is nice step.
Private sector is doing some great work by serving Thalassemia patients and hospitals like Agha Khan Hospital, Afzal Memorial Thalassemia & Kashif Iqbal Thalassemia are exceptional.
South Asian countries like Pakistan, India, Bangladesh have high number of Thalassaemia patients, whereas South East Asia has controlled Thalassaemia, China has very rare Thalassaemia and one our neighbouring country Iran has zero Thalassaemia. In Dubai, UAE, Thalassaemia treatment is free for all citizens and residents.
Jatin Kewlani is doing a great job regarding awarness of Thalassaemia and speaks at different forums and highlights problems faced by Thalassaemia patients and how these can be avoided. He also wants to negate the misconception that Thalassaemia patients don’t live longer than 12 years of age, he simply negates this concept and says that I am living a normal life and am planning to get married soon.
He is also a member of Rotary International and as a Rotarian fellow he would want to request Rotary International to focus on Thalassaemia just like they have focused Polio all around the world.
Jatin Kewlani is also a member of TIF – Thalassaemia International Federation and as a member he will be speaking at 14th International Conference on Thalassaemia & Haemoglobinopathies & 16th TIF International Conference for Patients & Parents 2017 to be held during 17th ~ 19th November 2017 at Grand Hotel Palace, Thessaloniki, Greece.