This page explains why finding a matching donor for Marc is so difficult, what happens during a stem cell donation, and why YOU could be the one person who makes all the difference.
Leukemia is a cancer of the blood-forming system. In bone marrow -- the spongy tissue inside our bones -- healthy blood cells are normally produced: red blood cells for oxygen transport, white blood cells for the immune system, and platelets for blood clotting.
In leukemia, abnormal white blood cells multiply uncontrollably. These diseased cells crowd out the healthy ones, and the body can no longer carry out its vital functions.
HLA stands for Human Leukocyte Antigen. These are proteins found on the surface of nearly all cells in the body. They act like an "identity card" for your cells -- they help the immune system distinguish between the body's own cells and foreign ones.
For a successful stem cell transplant, the HLA markers of the donor and the patient must match as closely as possible. Doctors check 10 relevant HLA markers (5 gene loci, each with 2 variants).
HLA markers are inherited -- you receive one set from your mother and one from your father. Over the course of human history, different populations have developed distinct HLA patterns:
Marc has a unique genetic mix: His mother is from the Dominican Republic (with Caribbean-African-European roots), and his father grew up in Germany with Silesian-Polish roots.
This means Marc's HLA markers are an extremely rare combination of Caribbean and Central European genes that is not common in any single population group.
The cause is not medical -- it is the underrepresentation of certain populations in donor registries. In the world's largest database, over 70% of registered donors are of European descent. People from the Caribbean, Latin America, Africa, and those with mixed heritage are significantly underrepresented.
When a person of Caribbean or Dominican descent registers, the chances for Marc increase exponentially -- because that person may carry exactly the rare HLA combination Marc needs. But people of Polish, Silesian, or Central European heritage are also important, because the father's HLA markers must also be represented in a potential donor.
You register online with a donor registry (e.g., DKMS). You will receive a free kit by mail containing cotton swabs for a cheek swab. You do the swab at home and send it back. Your HLA markers are analyzed and entered into the worldwide database.
If your HLA markers match a patient (the statistical probability ranges from about 1 in 500 to 1 in 1,000,000), you will be contacted. The following steps take place:
Method 1: Peripheral Blood Stem Cell Collection (90% of cases)
For 5 days before the collection, you receive a medication (G-CSF) that stimulates stem cell production. The stem cells then migrate into your bloodstream. During the collection, blood is drawn from one arm, the stem cells are filtered out, and the remaining blood is returned through the other arm. The procedure takes 3-5 hours.
Method 2: Bone Marrow Collection (10% of cases)
Under general anesthesia, approximately one liter of bone marrow-blood mixture is extracted from the pelvic bone (NOT the spinal cord!). That may sound like a lot, but your body fully replenishes this amount within a few weeks. You are typically back on your feet within a few days.
Generally, any healthy person between the ages of 17 and 55 (depending on the organization). Exclusion criteria include severe chronic diseases, certain infectious diseases, or a BMI over 40. If in doubt, simply answer the health questions during the registration process.
In Germany (DKMS) and Poland (DKMS), registration is free. In the USA (DKMS US) it is also free. In the Caribbean (Caribbean Bone Marrow Registry), costs of approximately $80 USD apply.
Yes! All donor registries worldwide are connected through the World Marrow Donor Association (WMDA). No matter where you register -- whether in Germany, the USA, Poland, or the Caribbean -- your data will be included in the global search.
The probability varies depending on your HLA type. Statistically, about 1 in 20 registered donors is eventually identified as a potential match. Of those, only a fraction is actually asked to donate.
Your data is used exclusively for donor searches and is treated in strict confidence. Registration takes place directly with the official organizations (DKMS, DKMS US, etc.) -- this website does not store any personal data.
Here is an overview of the most important registration options worldwide: