DKMS Thalassemia Programme

Sarah was diagnosed with thalassemia, an inherited blood disorder when she was just a few months old. As she grew, the disease restricted her from leading a normal life. Her parents had almost lost hope until they consulted Dr. Santanu Sen, who recommended a blood stem cell transplant as a curative treatment option for her condition. Sarah and her sister’s buccal swab samples were collected through awareness camps organised under the DKMS Thalassemia programme, fortunately Sarah was matched with her sister. Her sister donated her blood stem cells and Sarah underwent a successful transplant. Her life has changed after the transplant and today Sarah is living a healthy life like any other child.

Like Sarah, more than 10,000 children are born with this condition in India, every year, making it the Thalassemia capital of the world. The hereditary disease is widespread and affects many children in their infancy. Thalassemia is a genetic condition in which a defect in the protein hemoglobin reduces the transport capacity for oxygen in the blood. Thalassemia patients need regular blood transfusions to be able to survive.

The overwhelming burden of this disease is increasing every day, but there is hope!

Patients suffering from Thalassemia can be treated with a stem cell transplant, ideally at an early age. The need for transplants in children is therefore extremely high.

We help, where help is needed

Patients and their families face several challenges in their journey to transplantation. Many are experiencing financial hardships in their lives even before discussions on treatment options begin. They are over-burdened with several costs such as the cost for identification or search for a suitable stem cell donor which they cannot afford. Even for those patients who do get access to transplantation and appropriate health care, this often results in heavy social and financial burdens on their families.

We believe it is crucial to remove both socio-economic as well as infrastructural barriers to improve the access to transplantation. As a part of an international and multifaceted organization, we are able to fight life-threatening blood diseases such as Thalassemia by employing a wide range of programmes and services. This is why we have initiated the DKMS Thalassemia programme to help financially underprivileged patients in India and to save as many lives as possible.

About our programme

The DKMS Thalassemia programme, aims to support underprivileged Thalassemia patients in India, by identifying matching family donors. We also support unrelated donor searches for patients who do not find a suitable family donor.

For a blood stem cell transplant to be successful, the HLA (tissue characteristics) of the patient and the donor needs to match as closely as possible. For this, it is necessary that the patient, their siblings, and parents provide buccal swab samples for HLA typing. These are analyzed free of charge in our high-throughput laboratory, the DKMS Life Science Lab in Dresden, Germany.

There is a 25% (1 in 4) chance that a brother or sister will be an "identical match". In cases where there is no matching sibling for a sick child, there still remains hope that an unrelated, voluntary donor can be found. In some cases, a parent as a half-matched related donor can provide the lifesaving stem cell donation.

Objectives of the programme:

• To identify family donors by carrying HLA typing costs for patients in need of a transplant and their family members.
• To support unrelated donor searches for patients who do not find a suitable family donor.

What we do to help patients:

• We raise awareness that thalassemia can be cured through stem cell transplantation, for which a matching family donor would be optimal.
• We educate and raise awareness amongst Thalassemia patients and their families that DKMS can help them to find out if there is a matching donor within the family via free HLA typing (funded by the DKMS Group), in collaboration with local transplant partners and NGOs.
• We cooperate with local NGOs and transplantation clinics that organize events where pediatric Thalassemia patients and their family provide buccal swab samples for free HLA typing.
• We inform Thalassemia patients and their families that they will receive maximum support from DKMS and the partner organizations in their journey to transplantation, that also includes financial support as per the eligibility criteria under the DKMS Patient Funding Programme. We provide access to free searches for matched unrelated donors, in the absence of any matched related donors.

Who can benefit from this programme:

Financially Underprivileged Thalassemia patients in India, who are:

• Eligible for a stem cell transplant
• Have siblings and/or parents willing and available to be searched as a match for the transplant.

Our Partners

Success Stories & Testimonials

Jishan

Jishan was just four months old when his parents received the devastating news that their little baby boy was diagnosed with Thalassemia. The young boy painstakingly underwent regular blood transfusions every month, but the long journey and strenuous treatment was taking a toll on him and his family. They heard of Sankalp Centre, where Jishan was recommended a stem cell transplantation as a curative treatment option for his condition. Jishan's parents were unable to afford the cost of a blood stem cell transplant all by themselves. Jishan’s father is working as a truck driver and vendor and his mother is looking after the family as a home-maker. They went out of their way to organize funds and after a detailed clinical and financial analysis, the treatment was planned at the CIMS Hospital managed by Sankalp India Foundation in association with Cure2Children. DKMS and various funds contributed to the costs.

Jishan underwent a stem cell transplant in October 2020 and is recovering well. His family is very thankful for the support from Sankalp, Cure2Children, DKMS and all who have helped them to overcome the burden of Thalassemia.

Satnam (Father of Bibek):

“My son was diagnosed with Thalassemia in 2010 and had to undergo blood transfusion every 15 days. We came to CMC Ludhiana in 2018 for his transplant. Bibek is doing well and has an active lifestyle now. We are thankful to Dr. Joseph John and his team at CMC Ludhiana for their support. My son is now able to live his life to the fullest and this would not have been possible without the relentless efforts of DKMS.”

Harmanpreet (Father of Sidakpreet):

“We are grateful to DKMS for helping us find a stem cell donor for our daughter and the team at CMC Ludhiana for smoothly performing the transplant. The transplant has given a second chance to Sidak and a hope to lead a normal life. She is doing absolutely fine after her transplant in 2019. We will forever be thankful to them.