Introduction

Thalassemia major is an inherited blood disorder characterized by the formation of an abnormal form of hemoglobin. It causes monthly blood transfusions, iron overload and the daily need for iron chelation therapy, abdominal swelling, and facial bone deformities. To our knowledge, there are about 400 children in Nepal who are suffering from such a disease. The company’s director, Miss Rojina, had the same disease and was completely cured after fighting it for 17 years. Her family hopes that after she has finished her treatment, she will be able to help other thalassemia patients in Nepal get permanent treatment. She with her family started a campaign. Name is-“Soche jastai rahecha Sansar.” It is neither an organization nor a trust. It is only a campaign. There is no title, position, or office; anyone can be directly involved in this campaign with any kind of support.

Our Target

A bone marrow transplant is the only permanent treatment for thalassemia major. It is a very complicated and expensive process overseas. There were no treatment facilities in Nepal until our campaign. Attempting to start bone marrow transplant treatment in Nepal is our major target.

Activities

• We visited and connected with the Thalassemia Society of Nepal, which has been working on it.
• Donate and launch an informative music video for awareness and motivation for patients and the public, and financial donations.
• We visited and met Dr. Bishes Paudel (a bone marrow specialist) and the Civil Hospital, supporting and motivating them with positive pressure to start a bone marrow transplant.

Impact 

In February 2022, Dr. Bishes Paudel organized a bone marrow transplant at civil hospital in Kathmandu for a 3-year-old girl, and the transplant was successfully completed. Now it can be done in Nepal at a cost of Rs. 12 lakh, which is 300 times cheaper than in the USA and 5 times cheaper than in India. The target comes true. This shows RJ’s strength in leadership.

Challenge

• It is essential to support and motivate hospitals and doctors to continue this service.
• It is essential to support and motivate patients and their families for their permanent treatment.