Thalassemia
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What do famous Bollywood actors Amitabh Bachchan and Jackie Shroff have in common? They both have an invisible disability called Thalassemia minor. 

Two famed sports personalities also live with Thalassemia minor. Any guesses? Tennis player Pete Sampras and football player Zinedine Zidane!

Considered to be the Thalassemia capital, India has 4 million carriers of this blood disorder.

Persons with different types of blood disorders are recognized under the Rights of Persons with Disabilities Act, 2016.

  • Thalassemia is one of them, a condition caused when the body doesn’t make enough hemoglobin, an important protein in the red blood cells essential for carrying oxygen in the blood. 
  • There are two main types: Alpha Thalassemia and Beta Thalassemia. 
  • These are further classified based on the severity of symptoms.

Thalassemia is an inherited condition, passed down through families. If both parents carry the genetic mutation, there's a higher chance their child will inherit the disorder.

It's therefore very important for families to understand their genetic risk and seek genetic counseling to make informed decisions.

  • People with moderate to severe forms of Thalassemia are usually diagnosed within the first two years of life 
  • Symptoms include fatigue, bone deformation, stunted growth, weakness, anemia and so on
  • Thalassemia major patients have severe anemia and need regular blood transfusions and medical care

Thalassemia however, is a treatable disorder. 

Treatment may involve blood transfusions to maintain healthy hemoglobin levels, chelation therapy to remove excess iron from the body due to frequent transfusions, and in severe cases, bone marrow transplantation.

Thalassemia advocates working towards prevention insist that people get themselves tested when planning to get married or give birth.

Increasing awareness about Thalassemia, promoting genetic testing, and encouraging carrier screening before planning a family can help prevent its occurrence in future generations. An astrology match, in this case, is less relevant than an HbA2 or HB electrophoresis screening. 

Awareness about Thalassemia isn't just about understanding the condition, it's about empowering communities with knowledge, promoting early diagnosis, and offering valuable information to individuals and families affected by Thalassemia. 

Two organizations which can be contacted for more details are  National Thalassemia Welfare Society and Thalassemics India 

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Familiarize yourself with and expand your vocabulary of disability-related terminology! 
M - Mobility aids
C - Caregiver
W - Wheelchair user
S - Subtitled films
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