I was a blood donor beginning in college and continuing into my mid-30’s. I didn’t know much about bone marrow transplants until I was told I need one to live beyond 18 months to 2 years. I quickly learned about the process, the risks, and the challenges of finding a donor “match”.
It wasn’t until I learned that none of my siblings “match” me that I began to wonder: Why some people choose to volunteer to save a total stranger and why some people choose to not join the registry.
Is It a Choice If You Don’t Know the Options?
Most Americans are unaware of the opportunity to save a life by joining the National Marrow Donor Registry. I donated blood when I was healthy and my driver’s license says “organ donor.” No one ever told me — in health class, in my doctor’s office, in driver’s education, driver’s license or car registration, or in blood drives — that there was this other super simple way to possibly save someone’s life.
Had I known about marrow/stem cell donation, I would have swabbed my cheeks and joined (before my JAK-2 gene mutated)! Clearly, bone marrow/stem cell donation suffers from a huge lack of public awareness. And movie portrayals have mostly stoked fears.
First Step: Awareness — of need & possibilities
Because of my own ignorance, I’m now committed to raising awareness AND providing accurate information.
Did you know?
- Bone marrow or stem cell transplants (BMTs or SCTs) can cure more than 70 diseases including: leukemias, lymphomas, bone marrow diseases, inherited immune system disorders, red blood cells diseases (like sickle cell), inherited metabolic disorders, myelodysplastic syndromes, and myeloproliferative neoplasms.
- Only 10 million people registered to be marrow/PBSC donors while 86 million people are registered organ donors. You can donate bone marrow/stem cells and keep on living well!
- Most regular blood donors and platelet donors are not informed of the opportunity to register to be a potential marrow/stem cell donor.
- 6,000 children and adults are in need of a BMT/SCT every single day. Only 30% find a matching donor in time.
- 70% of patients DO NOT have a family member who is a match for them.
- Matches are determined by blood proteins called HLAs (human leukocyte antigens), NOT by blood type.
Second Step: Dispel the Myths
Here are some of the reasons people say they don’t want to register in what I call the “Myth Category.”
Myth: They have to drill into your bones, it hurts like heck, and it takes 6 weeks to recover.
Reality: There are 2 ways to donate bone marrow stem cells ~ Peripheral Blood Stem Cell Collection and Marrow Aspiration; Discomfort is minimal; Recovery time is minimal.
In most cases (75-80%), the blood stem cells are collected from the blood stream. For about 5 days leading up to the collection, the donor receives 1 shot each day to stimulate production of the stem cells.
Called ‘Apheresis’ the donor gets comfy for 4-6 hours while blood is drawn from one arm, sent through a machine that separates the stem cells, and returns the blood (minus the stem cells) to the donor’s other arm. It’s the same process as donating platelets or plasma.
This is also an out-patient procedure. The only pain is the momentary ‘stick’ to get the needle inserted in each arm. The donor is often tired the day after the apheresis process.
In just 20-25% of the cases (usually for child patients), the marrow is extracted with a syringe (no drill) inserted into the celiac crest of the pelvic bone (on your backside). No surgery, no stitches. For this out-patient procedure, the donor receives general anesthesia so no pain is felt during the procedure. The donor is usually groggy the next day (due to the anesthesia) and experiences mild pain on the spot where the needle was inserted. If you’ve ever slipped on the ice or otherwise bruised your backside, that pain is much worse and lasts longer than a bone marrow aspiration.
Myth: Bone marrow / stem cell donation requires a lot of time off of work.
Reality: Very little time is required away from work. Depending on when the procedure is scheduled, a donor might be away from school/work for 0-3 days.
If you are donating to someone not related to you, the stem cells are usually collected where you live and shipped to the patient. For example, my donor lives in Germany; his cells were transported to Atlanta, Georgia USA.
Myth: Once I register, I lose my privacy and the government has my DNA.
Reality: Bone Marrow donor registries are HIGHLY regulated to protect potential donor confidentiality. Donor information from the registration form is kept by the organization that registers the donor. The donor then gets a digital/barcode identity attached to his/her HLA information which is shared when the databases are searched for patient matches.
In the United States, a private, charitable nonprofit organization, Be the Match, is under contract with the federal government to be the national coordinator of bone marrow donor registries which comprise the national database. It is highly regulated and complies with US and international donor registry standards.
Myth: I might be able to go through all this for a family member, but I’m not sure I could do it for a complete stranger.
Reality: If you would save the life of a family member but were not a match, his/her life would likely depend on the generosity of a complete stranger. YOU could be the life saver another family is hoping for.
There are many reasons why people can not donate marrow/PBSC, blood, or platelets.
For those who are eligible to donate, it is important to have as much reliable information as possible to make a sound decision.