The only curative therapeutic option for thalassemia patients is blood stem cell transplantation.
Patients must discover a matching blood stem cell donor for a successful transplant.
Hyderabad, India, is renowned as the Thalassemia capital of the world since it has the most children with Thalassemia major. Every year, about 10,000 infants in India are born with Thalassemia, a congenital blood illness in which the body produces less hemoglobin, allowing red blood cells to transport oxygen. According to the World Health Organization, about four million Indians are thalassemia carriers, with over one million sufferers. Parents, generally asymptomatic, are carriers of this disease and have a 25% risk of passing it on to their children. Many children die in India due to financial constraints and a lack of access to treatment.
Thalassemia patients must get frequent blood transfusions for the rest of their lives to maintain their hemoglobin levels. It is, however, curable by stem cell transplantation. However, because of a lack of knowledge, price, and insufficient locations where this treatment is provided, only many cases have access to transplantation.
“Thalassemia patients are usually youngsters who go through severe blood transfusions for multiple years,” stated Dr. Sunil Bhat, Director and Clinical Lead, Pediatric Hematology, Oncology, Blood & Marrow Transplantation, Narayana Health, Bengaluru. Blood transfusions provide obstacles and hazards to patients. Currently, stem cell transplantation is the only curative treatment for this illness. Recent statistics reveal that stem cell transplantation is more than 90% successful in patients with HLA (Human Leukocyte Antigen) matched stem cell donors. A successful blood stem cell transplant requires a precise HLA tissue match. Patients and donors of Indian descent have distinct HLA features that are drastically under-represented in the worldwide database, making it even more challenging to identify a matching donor. The majority of Indian patients require an Indian tissue match. This necessitates increasing awareness and registering many more people in India as prospective blood stem cell donors.”
There are around 270 million Thalassemia sufferers worldwide, but knowledge of the condition is shockingly low. Thalassemia’s main symptoms commonly appear between the ages of 4 and 6 months and include lethargy, poor eating, growing pallor, poor weight growth, and occasionally vomiting and diarrhea. On inspection, the newborns are pallid and have enlarged liver and spleen.
After the thalassemia patient’s bone marrow has been damaged, stem cells are extracted from the donor’s blood and put into them. Only 30% of patients in need of transplants have a fully HLA-matched donor in their family; the remainder must rely on an unrelated donor.
The DKMS-BMST Thalassemia program has begun. DKMS-BMST partners with local NGOs and transplantation hospitals to conduct camps where pediatric thalassemia patients and their siblings go from India to provide buccal swab samples for free HLA typing. The centers’ representatives are tested in Germany’s DKMS laboratory, and clinical matching reports are generated. According to Patrick Paul, CEO of DKMS BMST Foundation India, “Our objective is to assist people in India who have blood cancer and other blood illnesses such as Thalassemia. We also encourage unrelated donor searches for patients with no matched sibling for a sick child.” So far, 7162 HLA typings have been enabled since the program’s commencement.
Bushra Naqeeb, an 11-year-old girl, has thalassemia.
When Bushra was six months old, she was pale and had low hemoglobin levels. She was diagnosed with Thalassemia after undergoing various tests and examinations. She had to endure excruciating blood transfusions for nearly ten years until the doctor recommended an allogeneic stem cell transplant as her sole hope of survival. As a result, the patient’s family opted for a stem cell transplant. The sample collection for the family was completed in February 2021, with the assistance of the DKMS-BMST thalassemia program, and she received a perfect match with her sister Soha. In October 2021, she received stem cell transplantation from Dr. Sachin Jadhav of the HCG network of institutions. Bushra is now able to live an everyday life following the transplant.
Mrs. Shobha Tuli, President-Federation of Indian Thalassemia Associations and founder of the NGO Thalassemics India, said, “At the moment, stem cell transplant is the only curative treatment available for Thalassemia patients.” If not treated on time, such people will be dependent on blood transfusions for the rest of their lives and additional costly therapies and regular tests. Thalassemia Bal Sewa Yojna is a one-of-a-kind program launched by the Government of India’s Ministry of Health and Family Welfare. Under this plan, Coal India Ltd. would provide financial assistance to patients up to Rs. 10 lakhs. DKMS has provided us with the option to receive free HLA tests across the nation. This allows patients to determine whether they have a matching sibling. Thalassemias India appreciates DKMS for providing this chance to patients who could not otherwise afford the fees of HLA matching.”
Sign up to be a potential blood stem cell donor:
Healthy persons aged 18 to 50 can register at dkms-bmst.org/register.
It just takes five minutes of your time and a three-step process:
Step 1: Go to the website, fill out an online form, and you’ll get a DIY swab kit delivered to your door.
Step 2: After receiving the swab kit, fill out the consent form and collect a tissue sample from the inside of your cheeks using the three cotton swabs included in the kit.
Step 3: Return your swab sample in the enclosed pre-paid envelope.
The DKMS laboratory will then analyze your tissue type, and your information will be available in the international search for blood stem cell donors. If you are a suitable donor, DKMS-BMST will contact you immediately. When you are found to be a match, blood stem cells will be extracted from your bloodstream via Peripheral Blood Stem Cell Collection, which is similar to donating blood except that just your stem cells are collected. This is a non-surgical outpatient technique that is entirely safe.
DKMS BMST Foundation India Information
A non-profit organization committed to preventing and treating blood cancer and other blood diseases such as thalassemia and aplastic anemia. We want to help patients with blood cancer and other blood illnesses in India and worldwide by spreading the word about blood stem cell transplantation and registering potential blood stem cell donors. DKMS-BMST offers a second chance at life to individuals needing a blood stem cell transplant.
DKMS-BMST collaborates with two well-known non-profit organizations: BMST (Bangalore Medical Services Trust) and DKMS, one of the world’s largest international blood stem cell donation clinics.
