Basic information

Every 15 minutes, somebody in Germany receives the shattering news that they have been diagnosed with blood cancer. Many patients are children and young people whose only chance of recovery is a stem cell donation. However, one in five patients does not find a donor. This website provides you with a concise overview of the subject of blood cancer and stem cell donation. At its heart are three short videos that show clearly how registration works, what happens afterwards and how stem cells are obtained during donation. With your help we can defeat blood cancer!

Information on other topics can be found in our FAQ.

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Basic information: blood cancer, HLA types and the needle in the haystack

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 cancer cells, the blood can no longer perform its vital functions, such as fighting infections, transporting oxygen, and stopping bleeding.

Blood cancer

Blood cancer is a general term describing malignant diseases of the bone marrow or the haemopoietic (blood-forming) system, in which the normal formation of blood is impaired by an uncontrolled proliferation of degenerate white blood cells. Because of these cancerous cells, the blood can no longer perform essential duties such as fighting infections, transporting oxygen and stopping bleeding.

The role of HLA types

HLA stands for human leucocyte antigen – and people also speak informally of ‘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.

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.

 

Like other diseases of the haemopoietic system (including malignant lymphomas and myelomas), leukaemia, which comes in various different forms, belongs to the various types of blood cancer. Stem cell transplants are often the only prospect of recovery from blood cancer illnesses.

 

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’ – DKMS 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, since unfortunately one in every five patients does not find an unrelated donor.

How we can defeat blood cancer together

We have been working to find suitable donors for patients worldwide since 1991. So far, more than four million stem cell donors have joined us in our fight against blood cancer. Yet one in five blood cancer patients in Germany alone still does not find a suitable donor. This is because, for a stem cell donation, the tissue types of the donor have to be identical to those of the patient. You might well be the right match, and you could become a true lifesaver with your stem cell donation. Our videos answer the most frequently asked questions about registration and stem cell donation. Find out how easy it is to register with DKMS, and how you too could become a lifesaver.

Register as a stem cell donor

DKMS : How to become a stem cell donor?

Becoming a stem cell donor is easy. To do so, request our registration pack online. You will then receive a pack containing swabs by post. Use these swabs to take a tissue sample from inside your cheek, and send it back to us together with the signed documents. Our laboratory then gets to work determining your tissue types. This is because, by knowing your tissue types, we can find out whether you are the right donor for a blood cancer patient.

What happens after registration?

DKMS: What happens after registration?

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. You will receive a DKMS donor card showing your 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. If you do come up as a suitable donor, we will get in touch with you straight away.

How a stem cell donation works

DKMS: What happens if you are eligible as a stem cell donor?

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 stem cell donation. In a few cases, stem cells are taken directly from the bone marrow.

Five steps to donating stem cells – overview

1. Registration

Damit Ihre Gewebemerkmale analysiert werden können, machen wir einen Wangenabstrich  mit Wattestäbchen.

To allow your tissue types to be analysed, we take a cheek smear using swabs. Alternatively, you can also request a lifesaver pack containing swabs here on our website.

2. Testing for tissue types

Wenn Ihre Gewebemerkmale zu denen eines Patienten passen, wird dies durch eine Blutprobe von Ihnen nochmals bestätigt und weitere Blutwerte werden ermittelt.

If your tissue types match those of a patient, this will be confirmed again using a blood sample which we take from you, and other blood readings will be determined.

3. Health check

Nach einem gründlichen Gesundheitscheck und der Aufklärung durch einen Arzt steht der Stammzellspende nichts mehr im Wege – Ihr endgültiges Einverständnis vorausgesetzt.

Determining tissue characteristics in the laboratory cost 40 Euro. As a charitable organization, we cover these costs with monetary donations.

4.1 Peripheral stem cell donation

Das Verfahren ist bei 80% der Spenden ähnlich einer Blutplasmaspende.

The process used for 80% of donations is similar to a blood plasma donation.

4.2 Bone marrow donation

Bei 20% aller Spenden wird unter Vollnarkose Knochenmark aus dem Beckenkamm entnommen.

In 20% of donations, bone marrow is extracted from the iliac crest under general anaesthetic.

Stem cell transplantation

Wie bei einer Bluttransfusion werden die Stammzellen nun transplantiert.

As with a blood transfusion, stem cells are then transplanted. They take up residency in the patient’s bone cavities and begin to form new, healthy blood cells there.

How your monetary donation can also save lives

DKMS is a charitable organisation. Initially we were supported financially by German Cancer Aid and the German Federal Ministry of Health. Since 1994 we have been financing ourselves by means of monetary donations from private individuals and companies, as well as expenses refunded by health insurance companies for maintaining our database.

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.

Fourty euros for a chance to live

Every euro counts in the fight against blood cancer because the registration of a new donor alone costs DKMS 40 Euro. However, not everyone can support us with a monetary donation when they register.

Maintaining our database

We can only sustain our crucial community if private individuals and companies support us financially. Every euro counts in the fight against blood cancer!

Other ways to help

There are many ways to support our fight against blood cancer.

Distribute our information material among your friends.

Follow us on social networks and share our appeals.

Organize a donor drive with us in your school, association, or company. Send us an e-mail!