(This is the first in a three part series that chronicles the experience of donating bone marrow.)
What would you do to have the chance to help save someone's life?
Many people have never heard of the Unrelated Bone Marrow Donor Registry (UBMDR)[Note: The UBMDR has been renamed One Match.]. What is it, how does it work, and how do you get on it are all questions I have been answering a lot lately. In this first article I will try to answer these questions and some of the other questions that one might have around the process of finding a match on the UBMDR.
In Canada, the UBMDR is run by Canadian Blood Services (CBS), but it is also part of an international registry. Every year hundreds of Canadian patients are seeking a match on the UBMDR, which for many of these patients, is their only hope for recovery from illness. You might be able to help! What does it take for you to help? All it will take is a bit of your time, a simple blood test and a willingness to donate either bone marrow or peripheral blood stem cells. Currently there are about 220,000 Canadians who have made this commitment.
How does it work? Your blood, regardless of blood type, (A, B, AB, and O) has certain characteristics that they are looking to match. The characteristics are called Human Leukocyte Antigens (HLA) - they are DNA markers. These antigens are found on the surface of the white blood cells. Now some antigens are more common in specific ethnic groups so it is important to have as many people in the registry as possible. The registry is also eager to attract young donors because generally they are in good health, and are associated with better long-term survival rates for recipients. So after reading the information on the CBS website www.blood.ca and doing a questionnaire, you can do an online health survey and if all goes well, CBS will contact you to gather a sample of blood for your typing. If you are between the ages of 17 and 50, and in general good health, you can join the registry. Your blood has 12 of these DNA markers, and the initial testing will get your top 6 markers. After that, if you have a match with a recipient, further testing may be required to match the remaining 6 markers.
Currently there are over 10 million people on Donor Registries around the world. What are stem cells? For the purpose of the UBMDR, stem cells are not the controversial cells often in the media these days. They are immature cells that can become either red or white blood cells or platelets. Bone marrow is a rich source of stem cells but they can also be found in the peripheral blood. Bone marrow is the soft tissue found in the centre of your bones. Bone marrow produces stems cells, which develop into the three types of blood cells. When bone marrow becomes diseased, one of the options is to kill off the bone marrow of the recipient and replace it with the bone marrow of a donor. A newer procedure is to transplant stem cells - peripheral blood stem cells (PBSC). In this new procedure a donor is given injections of granulocyte colony stimulating factor (G-CSF), which dramatically increases the number of stem cells available for transplant.
Once you have joined the registry there is not a lot you have to do. There is only a 30% chance of finding a match in a family and it is even smaller from someone unrelated. That is one of the reasons it is so important to get the message out to as many people as possible and have the registry grow, so that as many patients as possible can be helped. Once you are on the registry you must also notify CBS of changes in your health status that would prohibit you from donating and also let the CBS know when you move.
Donors are matched through computer databases. When a transplant physician contacts CBS with a request for a volunteer donor, the database is searched and compared with those on the UBMDR and then through the other registries around the world. If a viable match is found, then it goes to the next step. First, they will confirm that you wish to proceed, then the next steps will begin.
Now onto the how. How are stem cells donated? If you are donating bone marrow, you will be admitted to the hospital and while under a general anesthesia, a needle will be inserted into your pelvic bones on both sides of your lower back. About 3-5% of your total bone marrow will be removed, which your body will replace in a few weeks. This procedure will take about 2 hours and the donor is usually discharged the same day. If PBSC donation is requested by the transplant doctor, the stem cells are collected through a process of apheresis, where blood is drawn from one part of your body and run through a centrifuge which separates the stem cells from the blood and the rest of the blood is returned through another needle.
What is it like? Donating bone marrow, has a few short-term side effects, which sometimes include fatigue and soreness. To donate stem cells, because of the G-CSF, a donor may experience mild bone pain, muscle pain, or flu-like symptoms, which usually dissipate within 24-48 hours of donating.
After the cells are extracted, they are transported by medical courier to the patient who may be anywhere in the world. The patient would have undergone intensive chemotherapy and/or radiation to eliminate all of his or her diseased cells. The harvested cells are then transfused to the recipient and if all goes well, they will start producing healthy blood cells after a few weeks.
These transplants are used to treat a variety of diseases, such as leukemia and other cancers. It replaces bone marrow destroyed by radiation or chemotherapy. In aplastic anemia, it replaces abnormal or absent bone marrow. For some immunodeficiency diseases, it gives a patient a brand new immune system. For some enzyme deficiencies, the transplant can help provide the missing enzymes or replaces defective ones. Yet even with all that, you are only providing the possibility - but that possibility is worth it.
A donation is, in some cases, the last chance to save someone's life. Many people out there need help and it costs you little in time and discomfort, so why would you not consider joining? For more information, check out the CBS website. I joined a number of years ago when a friend's sister was sick with leukemia. I went through the process of finding out about the registry and joined. Then one day the phone rang … (Continued in part 2 of 3 in Imprint 2007-06-29)
[Part two will appear in Imprint 2007-06-29 and part three on 2007-07-13.]
(First Published in Imprint 2007-06-15 as 'There's more than blood in you to give.')
Note: In the United States of America the National Marrow Donor Program can be contacted at 612-627-5802 or on the web at www.NMDP.org for those who have asked for the information.
Part 1 - There's more than blood in you to give
Part 2 - The Callback
Part 3- The Donation
Part 4- The Followup