Youth Thalassemic Alliance

Youth Thalassemic Alliance

1208 member(s)

Our Motto 1. To assist patients suffering from thalassemia in securing medical treatment, including hospitalization and in securing transfusion of blood. 2. To monitor closely the medication, growth and thalassemia management. 3. To conduct blood donation camps in general and for thalassemia patients in particular 4. To organize and assist in organizing screening and medical camps for thalassemia patients. 5. To conduct on regular basis, or as may be found necessary, counseling or guiding centers or activities for thalassemia patients. 6. To organize social events for thalassemia patients. 7. To create awareness about thalassemia in the society in general by organizing and conducting lectures, publishing pamphlets, books and literature and through electronic media.

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I Talk To My Young Daughter About Benefits Of Blood Donation

Pranav Agarwal, 39, who has been donating blood for the last 21 years and has recently converted to being a regular platelet donor, talks about how a unit of blood from a single individual can potentially help 5 recipients and encourages people to come forward to donate blood to save more lives. When did you first donate blood? Could you tell us a little bit how it started? From an early age, I had thought about becoming a blood donor. Like everyone else, I was a little squeamish at the…
Staying Strong In The Face Of Thalassemia

Arsheen Fatima, 22 from Hyderabad, who suffers from Thalassemia Major, talks about how she has learnt to take life’s challenges in her stride, including transfusions every 15 days. Please tell us a bit about your condition, as in what you are suffering from I am suffering from Thalassemia Major. It is a chronic genetic blood disorder and its treatment includes regular blood transfusions and iron chelation therapy. When were you diagnosed? When I was 6 months old What were the early symptoms?…
"I Lost My Sister To Thalassemia But I Want To Save Others"

Sangeeta Wadhwa, a thalassemia major and psychologist, co-founder of Youth Thalassemic Alliance appeals for extensive premarital mandatory screening to bring down new occurrences and dreams to see India become like Cyprus one day - with zero thalassemia. You are going to be speaking on thalassemia at a public platform in Delhi today. What is your talk going to focus on? Being a psychologist counsellor I will be highlighting a range of topics affecting people with thalassemia.…
Should I Consider Stem Cell Transplant For Thalassemia?

Dr. Rima Anand of Wadia Hospital, Mumbai, who has 17 years of experience in Pathology and Transfusion medicine, answers burning questions on the feasibility of stem cell transplants for Thalassemia, eligibility criteria and post transplant care required for patients. What is the burden of Thalassemia in India? Have you seen an increase or decrease in these in their numbers? India has a huge burden with an estimated 100,000 patients with a β thalassemia syndrome. There are more than 1000…
I Want To Work For Children With Chronic Illness Like Thalassemia

Azra Fatima, 27 and her younger sister Arsheen Fatima both have thalassemia major and are partners in pain. Azra talks about the motivation provided by her family and her passion for her career. Also, tips by Mr. Aleem Baig for parents of children with thalassemia. Please tell us a bit about your condition I am a thalassemia major patient. Thalassemia is a genetic blood disorder in which the body doesn’t produce adequate haemoglobin because of the destruction of red blood cells. When were you…
Thalassemia and Delayed Growth and Puberty

Pankaj Sethi, 31, a thalassemia major patient and founder member of a support group, Youth Thalassemic Alliance (YTA), shares some of the psychosocial issues that surface during puberty for a young teen with thalassemia. That people with thalassemia require regular blood transfusions is well known. What needs greater attention is the psychosocial issues surrounding the disorder. Just as life becomes turbulent for an adolescent and young adult, the challenges for a teen with thalassemia gets…
Gene Therapy to Cure Thalassemia Holds Promise

Dr Niranjan Rathod, Associate Director and HOD, Haemato – Oncology and Bone Marrow Transplant, Nanavati Hospital, maintains that gene therapy could herald a revolutionary shift in treatment of thalassemia, but research is still at a nascent stage. What is gene therapy, with reference to thalassemia? Gene therapy for thalassemia involves genetic manipulation of the defective gene responsible for thalassemia, in patient derived stem cells with the help of a virus vector to correct the…
We Need Supportive Thalassemia Policies to Survive

Gagandeep Singh Chandok, 35, who has thalassemia, had started an online petition in 2017 urging the Government of India and medical community to allow clinical trials for gene therapy that holds promise of saving thalassemia patients from requiring blood transfusions. Read his passionate appeal. I was diagnosed with a genetic disorder beta thalassemia major as a young child. I was advised to start blood transfusion immediately. I received my first blood transfusion in Bombay when I was one-and-…
There is Blessing in my Thalassaemia

#WorldThalassemiaDay Partth Thakur, 20, a thalassemia major, started The Wishing Factory to fulfil the desires of the terminally ill. His life that is packed with adventure and altruism for the welfare of thalassemia patients can provide significant motivational influences to all. "I was born for a reason and all the struggle and endurance is only making me stronger" You started an initiative called The Wishing Factory to fulfil wishes of people with leukaemia and thalassemia. What…
Living and Learning from Thalassaemia

Simi Bhatia, 16-year-old college student, is a thalassaemia major patient. Here, she shares the story of her life where her positive outlook leaves little room for grief and despair. I was born with Thalassaemia Major. My parents tell me I was one-year-old when I was clinically diagnosed with the disorder. I used to be constantly sick with fever and chronic cough. My general physician recommended some tests to check my complete blood count (CBC) and haemoglobin level. Sadly, the tests showed…

Want to know where to get free blood transfusion

I am Ankur. I am thalassemia major. I live in Bangalore. I want to know where to get blood transfusion for free in Mumbai near by Virar because by grand parents live in Mumbai. So I want to go to Mumbai summer. So I want to where I can get blood…

Diet consideration for Thalassaemia

Are these special diet considerations for people with Thalassaemia? What are the things you think about on a day to day basis? When you go out to eat?

Introduction

Hello Friends I am Pankaj Sethi Co-Founder of Y.T.A (Youth Thalassemic Alliance), I would like to Thanks to the team of Patient Engage to support us and give this platform, where we can be connected globally with all patients, parents, doctors and…

May 2020 Newsletter: Be Informed Be Empowered - Thalassemia and Disability Special

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