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.
Rajesh Chaudhary, aged 33, is a husband and father who works as a Deputy Mamlatdar in Gujarat. He is a sickle cell warrior and does not allow his condition to limit him from achieving his goals. Diagnosed with sickle cell anemia at the age of 8, he discusses the challenges he has faced due to the condition and how he manages them on a daily basis. Please share your journey which lead to the diagnosis. Even though I lived in an area where sickle cell anemia is common, my parents did not…
Prevention of Sickle Cell Disease There is no known way to prevent this genetic disease. Avoid consanguineous marriages and encourage blood testing before marriage Screening tests such as Prenatal diagnosis or new born screening can be done to check if baby has sickle cell disease for prompt intervention and treatment. We must keep check on symptoms for sickle cell disease and early diagnosis of it. References Image 1 : https://www.aboutkidshealth.ca/Article?contentid=745&…
Management of Sickle Cell Disease and its Complications The key to manage sickle cell disease and its complication is rapid hydration and pain control. Any and all major organs are affected by sickle cell disease. Complications such as increased infections, leg ulcers, bone damage, early gallstones, kidney damage, eye damage or multi organ failure can happen. Taking the following steps to stay healthy might help avoid complications of sickle cell disease: Staying hydrated Regular…
Treatment of sickle cell disease aims to manage symptoms and prevent organ damage. Besides bone marrow transplants that can be curative for some people, there are also emerging gene therapies for sickle cell disease. Pain medications for pain crisis Drinking plenty of water daily (8 to 10 glasses) to manage pain crisis Blood transfusion Vaccinations and antibiotics to prevent infections Folic acid to prevent severe anemia Hydroxyurea helps to reduce the frequency of…
Early diagnosis of Sickle Cell Disease and treatment can reduce the risk of complication. Health care providers will recommend necessary tests based on medical history and physical examination. Here are the various tests and their role in screening and diagnosis of Sickle Cell Disease. Hemoglobin Electrophoresis Blood test is done to check if you have sickle hemoglobin and if you are a carrier for sickle cell disease. Genetic testing is used to identify the specific type of sickle…
There are several types of sickle cell diseases, each characterized by different genetic abnormalities. The main types include: Sickle Cell Anemia (SS): Inherited when a child receives two copies of the sickle cell gene from both parents. Common in African and Indian populations. Sickle Hemoglobin-C Disease (SC): Combines hemoglobin C and S. Similar symptoms to sickle cell anemia but less anemia. Common in West African, Mediterranean, and Middle Eastern populations. Sickle Beta-Plus…
Each person with Sickle Cell Disease may experience symptoms differently. List of symptoms include: Fatigue and weakness – Sickle cells have short life and less oxygen carrying capacity compare to normal red blood cells. This can lead to severe anemia, shortness of breath and dizziness. Pain crisis –When sickle cells get stuck in blood vessels due to their sticky property, they block the blood flow. This can result in pain crisis. Generally, pain occurs in chest, arms and legs.…
Causes of Sickle Cell Disease Sickle cell disease is caused by defect in gene and it is passed down from parents to children. The mutations in the beta globin genes affect the structure of hemoglobin molecule (also called as Hemoglobin S.), causing it to form abnormal "sickle" shapes. Figure 2 – How sickle cell disease is inherited? A child will be born with sickle cell disease only if two genes…
Sickle cell disease is an inherited disorder that leads to abnormal hemoglobin. All red blood cells contain hemoglobin, which carries oxygen throughout our body. Normal and healthy red blood cells are round in shape and move through small blood vessels to carry oxygen to all parts of the body. In sickle cell disease, abnormal hemoglobin causes the red blood cells to become sticky and hard and look like a C- shape called “sickle”. Due to this shape and sticky nature, it gets stuck in the…
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…
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…
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