Debunking the Myths of Stem Cell Donation

Just one person can make a difference for patients with blood cancer.
ALLIE CASEY
PUBLISHED: MARCH 10, 2017
Talk about this article with other patients, caregivers, and advocates in the Lymphoma Cancer CURE discussion group.
DKMS HAS A CLEAR MISSION: delete blood cancer. Founded just over 25 years ago, in Germany, the organization was created by Peter Harf, Ph.D., in an effort to save his wife, Mechtild, who had been diagnosed with leukemia. At the time, there were only about 3,000 potential stem cell donors in Germany. None of Mechtild’s siblings was a match, so she needed an unrelated donor. Unfortunately, that did not happen in time for her. But her death was not in vain. DKMS has registered more than 7 million potential donors and provided more than 60,000 transplants worldwide. The organization has expanded with offices in the United States, the United Kingdom, Poland and India.

CURE® spoke with James Kirkland, content strategist for DKMS (and registered donor himself), about donor myths and what the process entails.

How does the donor registry work?

Kirkland: The registry is a list of people who are simply saying that they are ready, able and willing, if ever needed. I think that’s one of the major misconceptions that people have about the registry. They think when you sign up, you are donating then and there, or you have to schedule the donation. I’ve had people actually ask, “Do you take the bones here?” Which is wrong on so many levels.

The registry is a community effort to empower individuals who have no necessary connection to the medical community. Also, to connect them to patients in need, based on the unique qualities of human leukocyte antigen typing, which can be looked at as genetic factors that are specific to you.

Mainly, we dispel myths, while also raising awareness about this great cause by actively asking people to register at physical drives across the country. Then, we help to facilitate those transplants and are available, so that when a patient finds a match, they contact us and we work with that donor individually.

What are some of the biggest myths that you will find?

The biggest obstacle we have is that people don’t know that you can even do this, that it’s voluntary, that you can sign up and, potentially, save a life. But the people who do know, they usually have a very skewed understanding of it, something that tends to be much more suited for Hollywood productions. We’ve seen on TV where someone is getting bone marrow extracted, without anesthesia, for a person that they know. That’s not how this works.

People think it’s a very laborious process. But, 75 to 80 percent of all donations are made through a method called peripheral blood stem cell (PBSC), which is similar to blood platelet or plasma donation.

People equate it to blood donation, so they think there’s somebody else out there who can do this. It’s not something someone else can do.

You are, potentially, the only match for this person. I think there’s no greater way to highlight your uniqueness, biologically, and your uniqueness as a person, than to be able to say, “I matched this person and when the time came, when that call came down, I said ‘yes.’ I made the difference in their life.”

Aside from PBSC, there is another method. How does that work?



Talk about this article with other patients, caregivers, and advocates in the Lymphoma Cancer CURE discussion group.
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