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Saving Lives
A DKMS Guide to Bone Marrow Donation
Who is DKMS?DKMS is the world’s largest bone marrow donor
center with over 3 million registered donors and
over 30,000 transplants.
Peter Harf, who lost his wife to blood cancer,
founded the organization as a non-profit in
Germany in 1991, together with Prof. Dr. Gerhard
Ehninger M.D. Peter´s daughter, Katharina Harf,
now leads DKMS in the U.S.
WHY WORK WITH DKMS?
We Can Help! Our years of experience organizing donor drives combined with the enthusiastic involvement by a patient’s family and friends are powerful factors in the success of patient drives.
• DKMS can help you organize a drive anywhere in the U.S.• DKMS uses high resolution typing minimizing search
time for patients.• DKMS does not require new donors to pay the $65
registration fee.• https://www.facebook.com/DKMSAmericas
DKMS
DKMS Americas has registered over 280,000 donors in the U.S., which allowed more than 650 patients to
receive a lifesaving transplant. Today, DKMS is the world’s largest and fastest growing bone marrow donor center with over 3 million
registered donors.
What is marrow or bone-marrow?
Bone-marrow is the soft, sponge-like material found inside bones. It contains immature cells called stem cells.
Bone-marrow transplantation (BMT) and peripheral blood stem cell transplantation (PBSCT) are procedures that restore stem cells that have been destroyed by high doses of chemotherapy and/or radiation therapy.
Who can become a bone marrow donor?
In principle, any generally healthy person between the ages of 18 and 55, who weighs at least 110 pounds and does not exceed a maximum body mass index (BMI) of 40, can register as a donor.
Certain health prerequisites must be met. These restrictions are intended to protect the well-being of both the donor and the patient.
Donors are asked to share personal information such as age, address and telephone number. This information is private but is included in the DKMS database.
What are stem cells?
Stem cells have the remarkable ability to develop into many different cell types in the body. Stem cells of the blood (hematopoietic stem cells) generate all other blood cells in the human body, including red blood cells, platelets, and white blood cells.
Most stem cells are found in the bone marrow, but some stem cells called peripheral blood stem cells (PBSCs) can be found in the bloodstream. Umbilical cord blood also contains stem cells.
What if I am a match? PART a.A. Peripheral Blood Stem Cell Donation (PBSC):
In this method, cells are collected via the bloodstream. To increase the number of stem cells in the bloodstream, donors receive daily injections of a synthetic protein called filgrastim for 4 days before and on the day of the collection.
On the day of collection the donor's blood is removed with a sterile needle from one arm and passed through a machine that separates out the blood stem cells. The remaining blood is returned to the donor through the other arm. The cell collection is an outpatient procedure that takes about 4-6 hours on 1-2 consecutive days.
Possible side effects and recovery: While taking the medication, many donors experience flu-like symptoms such as headaches, bone and muscle achiness and fatigue. Most side effects should subside within 48 hours of donating.
What if I am a match? PART b.B. Bone Marrow Donation:• B. Bone Marrow Donation:
Marrow cells are collected from the backside of the pelvic bone (not the spine) using a special syringe. Donors receive general anesthesia so no pain is experienced during the marrow extraction. This is a 1-2 hour, outpatient, surgical procedure.
Possible side effects and recovery: Many donors experience some pain, bruising and stiffness for up to two weeks after their donation. Within a week of donating, most donors are able to return to work, school and many regular activities. The donor’s marrow is completely replenished within a few weeks.
Expecting Mothers and the Cord Blood Bank of Arkansas
Cord blood is the blood that remains in the umbilical cord and placenta and are collected only after the birth of a healthy baby.
Cord blood cells are a source of treatment for patients with cancers such as leukemia and lymphoma who lack a bone marrow donor. Cord blood also has tremendous promise for regenerating diseased or injured organs,
including heart muscle, bone and spinal cord tissue.
• Donating is completely painless and simple. Before giving birth, request an easy-to-follow kit from the Cord Blood Bank of Arkansas to give to your doctor at the time of birth. From there the donated cells will be delivered to UAMS for storage.
• Deciding whether to donate cord blood for public use or store it for private use is a personal decision. Your options for using cord blood include:
• Storing your baby's cord blood in a public bank for public use to be transplanted into any patient that is considered a match. There is no cost to you because public cord blood banks cover the cost of processing, testing and storing donated cord blood.
• Storing your baby’s cord blood in a private bank, which allows you to store the cord blood for your own family. You are charged a fee for the initial collection plus an annual storage fee.
• At UAMS, we have one of the largest adult blood cell transplant centers in the country. The Cord Blood Bank of Arkansas will link with national and international networks of cord blood banks that supply these life-saving cells for transplant and research all over the world.
http://www.uamshealth.com/cordblood
Types of of LeukemiaAcute Lymphoblastic Leukemia (ALL) is the most common type of leukemia in young children. It is more common in adults than in children, and more commonly in men than women. Acute Myelogenous Leukemia (AML) is the most common type of acute leukemia. More than 11,900 new cases occur in the United States each year, mostly in older adults.
Chronic Myelogenous Leukemia (CML) occurs mainly in adults. A very small number of children also develop this disease.
Chronic lymphocytic leukemia (CLL) causes a slow increase in white blood cells called B lymphocytes, or B cells.
Hairy Cell Leukemia (HCL) About 80% of affected people are adult men.
T-cell Prolymphocytic Leukemia (T-PLL) is a very rare and aggressive leukemia affecting adults; somewhat more men than women are diagnosed with this disease.
Large Granular Lymphocytic Leukemia it is a rare and indolent (not aggressive) leukemia.[13]
Adult T-cell Leukemia is caused by human T-lymphotropic virus (HTLV), a virus similar to HIV.
MYTHDonors have to pay for the registration and the donation procedure.
FACTThere is no cost to the donor to donate. When a donor is matched with a patient, the patient's insurance, the National Marrow Donor Program which operates the Be The Match Registry or DKMS will pay the costs (including any travel, meals, lodging expenses that may be necessary). A donor’s insurance, will never be used. The best gift you could give is donating, so we don't ask you to pay. Although a donor never pays to donate, many people do contribute toward the donor registration fee when they sign-up as a bone marrow donor.
MYTHBone marrow donation involves a lengthy recovery process.
FACTPBSC donors take the drug filgrastim for five days leading up to donation and may have symptoms such as headache, bone or muscle pain, nausea, insomnia or fatigue during this time. These symptoms nearly always disappear one or two days after donating, and the donor is back to normal.Marrow donors can expect to feel fatigue, some soreness or pressure in their lower back and perhaps some discomfort walking. Marrow donors can expect to be back to work, school and other activities within one to seven days. The average time for all symptoms to disappear is 21 days.
Myth
Donating bone marrow is dangerous and weakens the donor. FACT
Though no medical procedure is without risk, there are rarely any long-term effects from donating. Only five percent or less of a donor's marrow is needed to save a life. After donation, the body replaces the donated marrow within four to six weeks.DKMS educates donors, answer questions every step of the way, and follows up with donors after donation.
MYTH
Pieces of the bone are removed from the donor.
FACT
Pieces of bone are not removed from the donor. In marrow donation, only the liquid marrow found inside the bones is collected. In a PBSC donation, cells are collected from the bloodstream in a process similar to donating plasma.
MYTH
Bone marrow stem cells are taken from the spinal cord.
FACT
In a bone marrow donation, stem cells are collected from the back of the pelvic bone (not the spinal cord) using a needle while the donor is under anesthesia. In a peripheral blood stem cell donation, the stem cells are collected directly from the bloodstream.
MYTH
All bone marrow donations involve surgery.
FACT
There are two ways to donate. The majority of donations do not involve surgery. The patient's doctor most commonly requests a peripheral blood stem cell (PBSC) donation, which is non-surgical and outpatient. If the patient's doctor requests marrow, marrow donation is a surgical procedure, usually outpatient.
MYTH
Bone marrow donation is painful.
FACT
General or regional anesthesia is always used for this procedure. Donors feel no needle injections and no pain during the marrow donation process. Afterwards, most donors feel some pain in the lower back for a few days or longer.
Bone Marrow Statistics
To find a marrow match for anyone is hard. Even within one's own family, the chances of finding one are only about 30%.
Bone Marrow Statistics
What are the actual chances of finding a suitable marrow or stem cell donor?
The odds are 1 in 20,000 in identifying an unrelated compatible marrow donor. YOU could be that special life-giving person!
Bone Marrow Statistics
Leukemia (a blood cancer) will strike 44,000 Americans this year, including 3,500 children. It will kill about half of the adults and about 700 of the children. Blood stem cell, cord blood or bone marrow transplant may offer the only chance for a cure.
Bone Marrow Statistics
At least 1,000 people die each year because they cannot find a matching donor.
Bone Marrow Statistics
A significant number of those on the national bone marrow registry cannot
be located or will not donate when asked to do so. The percentages of
donors who are available and willing are: 65 for Caucasians; 47 percent for
Hispanics; 44 percent for Asians; 34 percent for African-Americans.
Bone Marrow Statistics
Only 2 percent of the population is on the national registry.
Bone Marrow Statistics
Donating bone marrow is safe: More than 35,000 people have
donated bone marrow to a stranger without a single donor
death.
Bone Marrow Statistics
Blood cancer is the second leading cause of all
cancer deaths in the U.S. and kills more children
than any other disease.
Bone Marrow Statistics
Every 4 minutes someone is diagnosed with blood cancer and every 10 minutes, blood cancer
takesa precious life.
Bone Marrow Statistics
Only 30% of patients find a match within their family. The other 70%
of patients rely on a perfectstranger to give them a second
chance at life.
Bone Marrow Statistics
6 out of 10 patients never receive the lifesaving
transplant they need.
IT’S EASIER TO FIND A SOUL MATE THAN A DONOR MATCH!
Patients are most likely to match a donor with a similar ethnic background. Patients with more diverse ethnic backgrounds (including African-Americans, Latinos, Asians) tend to have more diverse HLA types,making it even more difficult to find a match.There are more than 4,000 known HLA characteristics that can occur in millions of combinations. Thedonor and patient must have at least 8 tissue (HLA) characteristics in common to be considered a matchbut ideally should have 10.Having more donors and more ethnic diversity on the registry increases the chance of finding matchesfor all patients.
Arkansas Statistics
So far we have registered over 4000 donors !
Cancer Warriors Anastacia Santa Cruz– Little Rock, AR is 15 and
was diagnosed with AML Leukemia January 28, 2012. She has been through one round of chemo.
Cancer WarriorsShirley Hurt – Jonesboro, AR is 68 and has AML
Leukemia. Her sister is the match and she is due for a transplant in April of 2012.
Cancer WarriorsLeslie – Little Rock, AR- is 29 and was diagnosed with AML Leukemia just hours before giving birth to Ayden. She has had 3 rounds of chemo. The baby is healthy, but Leslie still needs a donor.
Cancer WarriorsSeun Adebiyi is a 26 year old Yale Law School graduate who is also training for the 2014 Winter Olympics. In June 2009, he was diagnosed with lymphoma and leukemia and is now in remission.
Seun co-founded the Bone Marrow Registry in Nigeria.
Cancer WarriorsMike Smyers was 66. He had AML Leukemia. Three matches were found in a registry with 14 genetic markers. One was selected to do the transplant. His body ultimately rejected the new bone marrow which is sadly more common with people his age and older.
Cancer Warriors
Colin Flood, a 6-year-old boy from Middle Village, NY, was diagnosed acute lymphocytic leukemia in December 2011.Colin needs a match.
Cancer WarriorsShannon Tavarez- New York The 11-year-old who starred on Broadway in "The Lion King" passed away before a match could be found. She had AML Leukemia.83 percent of African-American patients who need marrow transplants don't find matchesThe circle of Life by Shannon Tavarez
Cancer WarriorsTerria is currently in the fight against JuvenileMyelomonocytic Leukemia (JMML) –DONORSARE NEEDED
Cancer WarriorsTony Bliss Little Rock, AR is 45 and has CLL. Doctors
have told him he needs a transplant asap.
DKMS donor, Caitlin, meets Jaz, the girl she saved.
• DKMS donor, Caitlin, meets Jaz, the girl she saved.
EVANDER HOLYFIELD JR. DONATES BONE MARROW
• Evander Holyfield Jr. Donates Bone Marrow
DKMS Donor Aaron with Joshua, the boy he saved
• http://www.youtube.com/watch?v=bR_yDhW11mA
CELEBRITIES HELP SPREAD THE WORD
50 Cent“My son is just a couple years older than Shannon and I can’t imagine if his life was needlessly cut short when there is
someone out there that could save him. A complete stranger is the only person who can give Shannon a fightingchance to live. Register with DKMS online at www.GetSwabbed.org.”In 2010, 50 Cent speaking about leukemia patient Shannon Tavarez.
Cindy Crawford“This is a cause that is very close to my heart and I hope we are able to raise awareness and funds for DKMS.”In 2008, Cindy Crawford was honored with the Mechtild Harf Award at the 2nd Annual DKMS Linked Against
Leukemia Gala.
Jennifer Lopez“These things just make you realize we are all interconnected and depend on one another.”
Jennifer Lopez spearheaded a bone marrow donor drive and rallied the Hispanic community to help a fellow Latina.
Jon StewartOn speaking about registering as a bone marrow donor.
“It’s a cheek swab. It’s an outpatient procedure. In New York City, it may be the most convenient thing you can do.So, I’m just hoping everybody comes out and takes care of it.”
Paul PierceOn speaking about leukemia patients.
“As a father myself, it is awful to see patients fight such a challenging disease like leukemia. I encourage the African-American community to join DKMS in the fight against leukemia.”
Rihanna“Leukemia is the most common disease children in the U.S. die of and we need to change that. I urge everyone to
sign up as a bone marrow donor with DKMS. If we have more donors, we can save more children.”DKMS along with Lisa Flynn’s family and Rihanna recruited more than 5,000 marrow donors, to help find a match for
Lisa.
Commonly Asked Questions from Previous Drives
Q: How long will it take to find a match? A: It depends, thousands go into the bank every day and typed against donors every day.
Q: How long does it take to get a donor card? A: They usually are sent out once a year, but they are placed on the registry immediately.
Q: How do I host my own drive? A: It’s Easy! Just contact DKMS and they will be happy to help you.
Q: Is the process painful? A: The extraction process will cause soreness for a few days, but most people are at work the
next day. The procedure is outpatient. There is no drilling into your spine!
Q: Does DKMS provide transportation for the donor as well? A: Yes, we provide everything, even missed wages at work up to a certain fee. DKMS calls the
donor to check in even two years later. DKMS also carefully monitors the whole process. If the donor has to go out of town for the collection, DKMS pays for flights, hotels and even for a friend to go with.
Become a Swab Warrior!
Become a SWAB WARRIOR!Start your own drive!
It’s easy, free, and painlessgo to
GETSWABBED.ORGDKMS Americas | 33 East 33rd Street, Suite 501 | New
York, NY 10016p: 866.340.DKMS (3567) | f: 212.209.6710 | e:
info@dkmsamericas.org |w: www.getswabbed.org
The End
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