“Advancing Thalassemia Care: The Role of NGOs and Community Support”

 Understanding Thalassemia and the Role of Bone Marrow Transplants

Thalassemia if you’re unknown, is a group of inherited blood disorders

characterized by the body’s inability to produce adequate amounts of hemoglobin, a protein in red blood cells that carries oxygen throughout the body. This condition leads to anemia, a state in which the body does not have enough healthy red blood cells. Managing thalassemia requires regular medical care and monitoring to prevent complications. Patients need to work closely with a healthcare team to manage symptoms, monitor iron levels, and address any complications that arise.

With proper treatment, individuals with thalassemia can lead relatively normal lives, although those with severe forms may face significant health challenges.

When it comes to curing the condition, the treatment for thalassemia depends on the type and severity of the disease. Common treatments include:

Blood Transfusions: Regular transfusions are necessary for severe forms to maintain normal hemoglobin levels.

Iron Chelation Therapy: Used to remove excess iron from the body, which can accumulate due to frequent blood transfusions.

Folic Acid Supplements: To support the production of red blood cells.

Bone Marrow or Stem Cell Transplant: The only potential cure, involving the replacement of the affected bone marrow with healthy marrow from a donor.

Gene Therapy: An emerging treatment option that aims to correct the genetic defects causing thalassemia.

Out of the common procedures that are out there, Paranubhuti Foundation took the initiative to organize HLA typing camp for thalassemia patients in Pune & Sambhaji Nagar (Aurangabad) Maharashtra. These camps were meant to benefit of underprivileged children suffering from thalassemia. Children with beta thalassemia major require regular blood transfusions to manage their condition, leading to a lifetime of dependency and the risk of iron overload. A bone marrow transplant, also known as a stem cell transplant, offers a potential cure by replacing the defective bone marrow with healthy marrow from a compatible donor.

We had organized these camps at the district hospital in collaboration with Kokilaben Dhirubhai Ambani Hospital & Parents Association Thalassemia Unit Trust.

DKMS – BMST had provided free testing kits for this mission to cure the thalassemia disease and the affected patients. About 250 affected children & approximately 700 potential donor relatives gave samples for the testing for bone marrow transplant procedure.

Raising awareness about thalassemia and the importance of bone marrow transplants is a critical function of NGOs. Through educational campaigns, workshops, and community outreach, we informed families about treatment options, the significance of early diagnosis, and the benefits of BMT. Educating the public also helps in dispelling myths and reducing the stigma associated with the disorder.

Advancing thalassemia care through bone marrow transplants is a multifaceted challenge that requires the concerted efforts of NGOs, community support, and healthcare providers. By providing financial aid, raising awareness, facilitating donor matches, and offering emotional support, our foundation plays a vital role in giving needy children a chance at a healthier, more fulfilling life. Continued collaboration, innovation, and commitment are essential in overcoming the barriers to accessing life-saving treatments and ensuring that every child with thalassemia has the opportunity to thrive.