Every 6 minutes, somebody in India receives the shattering news that they have been diagnosed with blood cancer (such as leukemia, lymphoma or myeloma), thalassemia or aplastic anemia. Many patients are children and young people whose only chance of recovery is a stem cell donation. Only about 30% of the patients in need of a stem cell transplant as life-saving treatment, are able to find a sibling match. The rest 70% depend on finding a matching unrelated donor. This website provides you with a concise overview of the subject of blood cancer and stem cell donation. With your help we can defeat blood cancer, thalassemia and aplastic anemia!
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Blood cancer is the umbrella term for malignant diseases of the bone marrow or the hematopoietic system in which normal hematopoiesis (the formation of blood) is disrupted due to the uncontrolled proliferation of malignant blood cells. Because of these cancerous cells, the blood can no longer perform essential duties such as fighting infections, transporting oxygen and stopping bleeding.
Stem cell transplants are often the only prospect of recovery from blood cancer illnesses.
The role of HLA types
HLA stands for human leucocyte antigen, also commonly known as ‘tissue types’. HLA types are structures on the surfaces of tissue cells which allow the immune system to distinguish between its own and alien tissue. For a blood stem cell transplant to succeed it is important that the HLA types of the donor and patient are as close to identical as possible in order to avoid rejection reactions. There are currently over 17,000 known HLA types.
The needle in the haystack
Tissue types are passed from parents to children. But only a third of patients who need stem cell donations find a suitable donor within their own families. Most of them therefore require another donor who is not related to them. The likelihood of finding a suitable donor outside the family, however, is very low, since the number of possible combinations of HLA types is very great indeed – there can be more than 10,000 permutations.
Leukemia is a blood cancer that develops when normal blood cells change and grow uncontrollably. There are four main types named according to the cells affected (myeloblasts, lymphocytes) and whether the disease starts with mature or immature cells (chronic, acute).
Lymphoma is the name for a group of blood cancers that develop in the lymphatic system. The two main types are Hodgkin lymphoma (generally starts in blood and bone marrow) and non-Hodgkin lymphoma (generally starts in lymph node and lymphatic tissue.)
Multiple myeloma starts in the bone marrow when plasma cells begin to grow uncontrollably. As the cells grow, they compromise the immune system and impair the production and function of white and red blood cells causing bone disease, organ damage and anemia among other conditions.
Transferring stem cells from a donor to a patient gives the patient an opportunity to develop a new and healthy blood-forming system. We currently know of six different transplant-relevant HLA types: HLA-A, HLA-B, HLA-C, HLA-DRB1, HLA-DQB1 and HLA-DPB1 plus KIR and CCR5. These in turn have more than 10,000 possible permutations.
To find unrelated donors – who we call ‘genetic twins’ – SCRI registers as many stem cell donors as possible in order to give every blood cancer patient a second chance at living. We are not yet there, hence, unfortunately three in every five patients does not find an unrelated donor.
Becoming a stem cell donor is easy. To do so, just drop by our office or request our registration kit by sending us an email. You will then receive a kit containing swabs and consent form by post. Use these swabs to take a tissue sample from inside your cheek, and send it back to us together with the signed form. You will receive a SCRI donor number, which you can provide to us for things like changing address. By and large, that’s everything done from your point of view.
Our laboratory analyses your tissue types and enters them into our database. Your details will then be available in the global search for stem cell donors. If you do come up as a suitable donor, we will get in touch with you straight away.
There are two different ways of donating stem cells. In most cases (80%), stem cells are obtained from the bloodstream using a procedure called peripheral blood stem cell donation. In a few cases, stem cells are collected directly from the bone marrow.
To allow your tissue types to be analysed, we take a cheek smear using swabs.
2. Testing for tissue types
If your tissue types match those of a patient, this will be confirmed again using a blood sample.
3. Health check
Determining tissue characteristics in the laboratory cost ₹3000. As a charitable organization, we cover these costs with monetary donations.
4.1 Peripheral stem cell donation
The process used for 80% of donations is similar to a blood platelet donation.
4.2 Bone marrow donation
In 20% of donations, bone marrow is extracted from the iliac crest under general anaesthetic.
5. Stem cell transplantation
Stem cells are transplanted to the patient just like a blood transfusion. Thereafter, they take up residency in the patient’s bone cavities and begin to form new, healthy blood cells there.
Registration costs us money
To be specific, we need financial help to register new donors in our database. Determining the tissue types of each donor in our laboratory costs money.
Three thousand rupees for a chance to live
Every rupee counts in the fight against blood cancer because the registration of a new donor alone costs SCRI ₹3000. However, not everyone can support us with a monetary donation when they register.