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.
Namitha A Kumar, living with thalassemia intermedia, points out that thalassemia is more burdensome for girls and women because of additional hormonal disruptions, chronic pain and issues like amenorrhea, hypogonadism, osteopenia and osteoporosis. Read her personal story and her commitment to prevention advocacy and timely interventions. I am a warrior with thalassemia intermedia living with this condition since the age of 4. I was diagnosed at the age of 4 and since then been on regular blood…
Nishat Fatima, 28 from Hyderabad, India was diagnosed with ITP, Immune thrombocytopenic purpura, a rare autoimmune disorder that can lead to excessive bruising and bleeding. She shares her journey through diagnosis and the challenges of living with this condition and how it changed her from being an active and jolly person. Initial symptoms In 2016, just a couple of days after my wedding, I was down with vomiting and dizziness. On one visit, my brother remarked that I looked yellow. The…
हम सब रक्त से जुड़े हुए हैं क्या आप रक्त दान कर सकते हैं? रक्त दान के लिए क्या तैयारी करनी चाहिये? रक्त दान करने के बाद किस तरह की देखभाल की जरूरत है? इन सब सवालों के जवाब, एक जगह। रक्त दान के लिए योग्यता/ रक्त दान कौन कर सकता है • कोई भी स्वस्थ व्यक्ति जो फिट है और जिसे कोई संक्रामक रोग नहीं है, वह रक्त दान कर सकता है। • रक्त दाता की उम्र 18 और 60 के बीच होनी चाहिए और वजन कम से कम 50 किलो होना चाहिए। कुछ ब्लड बैंक वजन 45 किलो से अधिक हो तब भी रक्त दान की अनुमति देते हैं…
Healthy donors are encouraged to continue donating blood despite pandemic because there are still patients in hospitals in need of blood transfusions and blood components, maintains Dr Lalit Dhantole, Consultant/Head Transfusion Medicine, Fortis Hospitals Mumbai The Covid-19 pandemic has severely affected lives in all sectors. How have blood banks been impacted? As far as blood donation is concerned, blood donors are the backbone of effective blood transfusion services. Lockdown due to Covid-19…
Dr Prantar Chakrabarti, Consultant Hemotologist, explains in detail what a Bone Marrow Transplant is, the need for a Bone Marrow Transplant (BMT) for persons with thalassemia as well as its pitfalls. Read carefully to understand whether its the appropriate treatment for your child. What is BMT? What does a typical BMT entail? BMT, ie. Bone Marrow Transplantation is a treatment procedure by which hematopoietic stem cells which are responsible for development of all types of blood cells are…
For Jharana Mallick, living with Thalassemia Major, an accident became an eye-opener and turning point of her life. Read how she has become a strong support for many thalassemia patients. In 2015, at 21, while I was returning from work one day, I sustained a small knee injury due to a mishap on the road.I was living in Bhubaneswar at that time. I was taken to a general hospital, but I was being moved from ward to ward. In a couple of days, my wound turned septic. Doctors said my leg would have…
Due to the Coronavirus lockdown, majority of People with Hemophilia (PWH) are suffering in silence with severe pain by taking pain killers and homeopathic medicines prescribed by our doctors, informs Ramu Gadkar, Regional Chairperson Haemophilia Federation of India – Western Region. How has the Coronavirus lockdown affected the supply of lifesaving, essential drugs for hemophilia patients? These essential drugs come through courier via flight services from Hemophilia Federation of India (HFI),…
On occasion of World Hemophilia Day, Dr Chakraborty, Consultant Hemotologist, shares his views on diagnosis and treatment of thalassemia as also on how the present crisis of Covid 19 is affecting People With Hemophilia. The theme of World Hemophilia Day in 2020 is “Get+involved”. Why should people get involved in bleeding disorders like Hemophilia? Hemophilias are a group of bleeding disorders where due to genetic transmission, clotting factors are either not produced or are produced…
Thalassemia patients across the country are in a state of panic. There is an acute shortage of blood in the blood banks. Supply of crucial medicines is impacted. Thalassemia patients are trying to reach various authorities to resolve the critical issue. Thalassemia (a genetic disorder) patients need regular packed red cell transfusions for their survival.. Along with transfusions, they also require iron chelation therapy to remove the excess iron which accumulates from the red…
Gagandeep Singh Chandok, 37, who has thalassemia, shares with us the long hours spent at the blood transfusion centre every fortnight and how he keeps himself busy. I have been receiving blood transfusion from the time when I was one-and-a-half-years old. I was required to take blood transfusion every 15 days to survive. My mom tells me I was very uncomfortable with the needle inside me and screamed my lungs out. Till the age of four, the sight of the hospital would freak me. I would start…
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…
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?
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…
Latest Communities
Parkinson's Disease, Multiple Sclerosis, Stroke Rehabilitation, Migraine Content for Dementia and…
Pre-diabetes, Type 1, Type 2, Gestational, Complications, Diet and Nutrition, Yoga for Diabetes, Personal stories, News…
A place where Caregivers come together to share common experiences, challenges,and resources. Caregivers are…
