Save a Life
through stem cell donation

SDS patients are at high risk of needing a life saving bone marrow / stem cell transplant during childhood, young adulthood, and beyond. Currently, it is the only curative treatment for several life threatening bone marrow complications of SDS, including acute myeloid leukemia (AML), myelodysplastic syndrome (MDS), aplastic anemia, and bone marrow failure. About 1 in 3 SDS patients will need a bone marrow transplant by age 30, for a chance to survive. Therefore, we passionately support bone marrow and stem cell donation programs, as our patient community critically depends on healthy individuals to save our loved-ones lives. 70% of patients don't have a fully matched donor in in their family, and will rely on generous donors like you. 

To sign up to be on the national (US) bone marrow registry though Be The Match, please sign up though the link below.  You need to be good health and between the ages 18 and 44 in order to qualify for free. More details are available on the sign up page.

https://join.bethematch.org/SwabForSDS

 
 
 
 
 

Alternatively, you can also be registered through DKMS at https://www.dkms.org/, free up to age 55.

Find a stem cell registry outside of the US / globally

 

Be The Match has cooperative relationships with many other registries around the globe allowing them to search their registries, and for them to search Be the Match' when seeking a match.  To view these cooperative registries and international donor centers, visit http://bethematch.org/About-Us/Global-transplant-network/.

A listing of all registries is available on the World Marrow Donor Association (WMDA) website at https://share.wmda.info/display/WMDAREG/Database.

 
JOINING the Be The Match Registry

 

Joining the registry involves multiple steps. It is a defining moment in a person’s life—a declaration of their values and commitment to help others.

  • Joining the Be The Match Registry means volunteering to be listed as a potential blood stem cell donor, ready to help any patient in need of a life-saving donation.

  • It’s easy to join the registry. All it takes is a simple cheek swab.

  • You need to be healthy and willing to help any patient. 

  • Because of the genetic complexity of matching donors to patients, it could be several months, or many years before you’re matched to a patient and asked to donate.

  • Being on the registry is like being on the world’s best waiting list.

  • You could be someone’s only genetic match—their only hope for a cure.

 
FIVE STEPS TO SAVE A LIFE


Donating isn’t just something you do—joining the registry is a promise to stay committed and donate when needed.

  1. Register online – Answer simple questions about your medical history to make sure you meet health guidelines.

  2. Receive a cheek swab kit by mail in about 3-7 business days.

  3. Swab your cheek and return the kit – Your sample will be tested and your genetic type will be added to the Be The Match Registry.

  4. Stay committed while you wait to be matched – Because of the genetic complexity of matching donors to patients, it could be several months or many years before you’re matched to a patient.

  5. Say “Yes” when asked to donate – Patients and their families are counting on you to keep your promise to donate if needed. You could be someone’s only hope for a cure.

PATIENTS IN NEED


Patients in need of a life-saving blood stem cell transplant count on Be The Match to find them a genetically matched donor.

  • Every three minutes, someone in the United States is diagnosed with a blood cancer.

  • Right now, thousands of patients with blood cancers and other deadly diseases are desperately searching for their genetic match; someone willing to donate life-saving blood stem cells to be their cure.

  • Seventy percent of patients do not have a fully matched donor in their family. They depend on Be The Match to find an unrelated blood stem cell donor.

 
 
THE NEED FOR YOUNG ADULT DONORS

  • Young adult donors are especially needed to help patients in need of a life-saving blood stem cell donation.

  • Young adult donors have the healthiest, most robust blood stem cells, which produce the best results for patients.

  • When given a choice of genetically matched donors, transplant doctors choose younger donors 85% of the time.

  • We need healthy young donors to replace older registry members as they age off at 61.

  • The vast majority of donors say it was worth it to save a life, and they would do it again.

HOW BLOOD STEM CELL TRANSPLANT WORKS


Donors want to understand how a transplant works so they can easily explain how their donation could save someone’s life.

 

  • Your healthy blood stem cells can be a cure for someone with blood cancer or other deadly disease.

  • A blood stem cell transplant works by replacing the patient’s diseased blood stem cells with healthy cells from a genetically matched donor. The transplant replaces the patient’s entire blood and immune system.

  • Donors and patients need to be a close genetic match. Matching is based on genetic markers called human leukocyte antigen (HLA).

  • Because genetic markers used in matching are inherited, donors are most likely to match someone who shares the same ethnic background.

  • Genetic type used to match donors and patients is much more complex than matching blood type. In fact, they don’t need to be the same. The patient’s blood type will change to the donor’s blood type after transplant.

 


HOW DONATION WORKS


Donors want to understand how the donation process works so they can be confident in their decision to donate.

  • There are two donation methods: peripheral blood stem cell (PBSC) donation, and marrow donation.

  • The patient’s doctor decides the donation method that is best for the patient.

PBSC Donation

  • Most donors (75%) are asked to provide blood stem cells collected from the circulating blood. This is called a peripheral blood stem cell donation, or “PBSC donation.”

  • PBSC is a nonsurgical procedure, called apheresis. It’s similar to donating platelets.

  • For five days leading up to donation, the donor is given shots of a drug called filgrastim that increases the number of blood-forming stem cells in the bloodstream. On the fifth day, blood is drawn from one of the donor’s arms and circulated through a machine that filters out the stem cells and returns the remaining blood to the donor.

  • Most donors visit with friends or binge watch TV during the procedure.

Side effects and recovery

  • Leading up to a PBSC donation, donors may experience headaches or body aches several days before collection due to side effects of the filgrastim. These side effects go away shortly after the donation. PBSC donors are typically back to their normal routine in 1 to 2 days.

  • Most PBSC donors report a full recovery within 7 to 10 days of donation. Be The Match follows up with donors until they report a full recovery.

MARROW Donation

 

  • Some donors (25%) are asked to provide blood stem cells collected from bone marrow.

  • Marrow donation is a surgical procedure that takes place in a hospital operating room. The donor receives anesthesia and feels no pain during the procedure.

  • Doctors withdraw blood stem cells from small punctures in the back of the donor’s pelvic bone.

Side effects and recovery

  • Discomfort during recovery varies from person to person. Side effects may include back pain, fatigue, headache or bruising for a few days or weeks. Donors are typically back to their normal routine in 2 to 7 days.

  • The median time to full recovery for marrow donors is 20 days.

ETHNIC BACKGROUND


Be The Match is committed to addressing this disparity by recruiting donors who increase diversity of genetic types underrepresented on the registry.

 

  • Patients are most likely to match donors who share the same ethnic background because genetic traits used to determine a match are inherited.

  • Because some tissue types are uncommon or rare, there are still many patients who can’t find a match. You might be the only person who could be someone’s cure.

  • Some ethnic groups and multiracial individuals have more complex tissue types than others, which makes it harder to find a match.

  • Children with parents from different ethnic backgrounds are inheriting new and unique genetic combinations.

 

 

LIKELIHOOD OF FINDING A MATCH


Be The Match recognizes ethnic background contributes to a patient’s likelihood of finding a match on the Be The Match Registry. We are committed to sharing this information to motivate more people to join.

 

  • Given the current makeup of the Be The Match Registry, the likelihood of finding a match for patients in need of a transplant ranges from 23-77% depending on patient ethnic background.

  • Improving the ethnic diversity of the registry improves all patients’ odds of finding a life-saving match, regardless of their ethnic background.

  • More people are needed to join the registry so patients have a greater chance of finding a match.

Shwachman-Diamond Syndrome Alliance

To advance treatments and finding a cure for Shwachman-Diamond Syndrome.

Contact us:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441
          Woburn, MA 01888

Shwachman-Diamond Syndrome Alliance is a US based not-for-profit 501(3)c corporation, serving the global SDS community.

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