Saving LivesA 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
DKMSDKMS 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 betweenthe ages of 18 and 55, who weighs at least 110pounds and does not exceed a maximum body massindex (BMI) of 40, can register as a donor.Certain health prerequisites must be met. Theserestrictions are intended to protect the well-being ofboth the donor and the patient.Donors are asked to share personal information suchas age, address and telephone number. Thisinformation is private but is included in the DKMSdatabase.
What are stem cells?Stem cells have the remarkable ability to developinto many different cell types in the body. Stemcells of the blood (hematopoietic stem cells)generate all other blood cells in the human body,including red blood cells, platelets, and whiteblood cells.Most stem cells are found in the bone marrow,but some stem cells called peripheral blood stemcells (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 donors 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 babys 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 ofleukemia in young children. It is more common in adults than inchildren, and more commonly in men than women. Acute Myelogenous Leukemia (AML) is the most common type of acuteleukemia. More than 11,900 new cases occur in the United States eachyear, mostly in older adults.Chronic Myelogenous Leukemia (CML) occurs mainly in adults. A verysmall number of children also develop this disease.Chronic lymphocytic leukemia (CLL) causes a slow increase in whiteblood 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 aggressiveleukemia affecting adults; somewhat more men than women arediagnosed with this disease.Large Granular Lymphocytic Leukemia it is a rare and indolent (notaggressive) leukemia.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 donationprocedure.FACTThere is no cost to the donor to donate. When a donor ismatched with a patient, the patients insurance, the NationalMarrow Donor Program which operates the Be The MatchRegistry or DKMS will pay the costs (including any travel,meals, lodging expenses that may be necessary). A donor’sinsurance, will never be used. The best gift you could give isdonating, so we dont ask you to pay.Although a donor never pays to donate, many people docontribute 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 todonation and may have symptoms such as headache, bone ormuscle pain, nausea, insomnia or fatigue during this time.These symptoms nearly always disappear one or two daysafter donating, and the donor is back to normal.Marrow donors can expect to feel fatigue, some soreness orpressure in their lower back and perhaps some discomfortwalking. Marrow donors can expect to be back to work, schooland other activities within one to seven days. The averagetime for all symptoms to disappear is 21 days.
MythDonating bone marrow is dangerous andweakens the donor.FACTThough no medical procedure is without risk,there are rarely any long-term effects fromdonating. Only five percent or less of a donorsmarrow is needed to save a life. Afterdonation, the body replaces the donatedmarrow within four to six weeks.DKMS educates donors, answer questionsevery step of the way, and follows up withdonors after donation.
MYTHPieces of the bone are removed from thedonor.FACTPieces of bone are not removed from thedonor. In marrow donation, only the liquidmarrow found inside the bones is collected. Ina PBSC donation, cells are collected from thebloodstream in a process similar to donatingplasma.
MYTHBone marrow stem cells are taken from thespinal cord.FACTIn a bone marrow donation, stem cells arecollected from the back of the pelvic bone(not the spinal cord) using a needle while thedonor is under anesthesia. In a peripheralblood stem cell donation, the stem cells arecollected directly from the bloodstream.
MYTHAll bone marrow donations involve surgery.FACTThere are two ways to donate. The majority ofdonations do not involve surgery. Thepatients doctor most commonly requests aperipheral blood stem cell (PBSC) donation,which is non-surgical and outpatient. If thepatients doctor requests marrow, marrowdonation is a surgical procedure, usuallyoutpatient.
MYTHBone marrow donation is painful.FACTGeneral or regional anesthesia is alwaysused for this procedure. Donors feel noneedle injections and no pain during themarrow donation process. Afterwards,most donors feel some pain in the lowerback for a few days or longer.
Bone Marrow StatisticsTo find a marrow match for anyone ishard.Even within ones own family, thechances of finding one are only about30%.
Bone Marrow StatisticsWhat are the actual chances of finding asuitable marrow or stem cell donor?The odds are 1 in 20,000 in identifyingan unrelated compatible marrowdonor. YOU could be that special life-giving person!
Bone Marrow StatisticsLeukemia (a blood cancer) willstrike 44,000 Americans this year,including 3,500 children. It willkill about half of the adults andabout 700 of the children. Bloodstem cell, cord blood or bonemarrow transplant may offer theonly chance for a cure.
Bone Marrow StatisticsAt least 1,000 peopledie each year becausethey cannot find amatching donor.
Bone Marrow Statistics A significant number of those on thenational bone marrow registry cannot be located or will not donate when asked to do so. The percentages of donors who are available and willingare: 65 for Caucasians; 47 percent for Hispanics; 44 percent for Asians; 34 percent for African-Americans.
Bone Marrow StatisticsOnly 2 percent of the population is on the national registry.
Bone Marrow Statistics Donating bone marrow issafe: More than 35,000 peoplehave donated bone marrow to astranger without a single donor death.
Bone Marrow StatisticsBlood cancer is the second leading cause of allcancer deaths in the U.S. and kills more children than any other disease.
Bone Marrow Statistics Every 4 minutes someone isdiagnosed with blood cancer and every 10 minutes, blood cancer takes a precious life.
Bone Marrow StatisticsOnly 30% of patients find a matchwithin their family. The other 70% of patients rely on a perfect stranger to give them a second chance at life.
Bone Marrow Statistics6 out of 10 patients never receive the lifesaving transplant they need.
IT’S EASIER TO FIND ASOUL MATE THAN ADONOR MATCH!Patients are most likely to match adonor with a similar ethnicbackground. Patients with morediverse ethnic backgrounds (includingAfrican-Americans, Latinos, Asians)tend to have more diverse HLA types,making it even more difficult to find amatch.There are more than 4,000 knownHLA characteristics that can occur inmillions of combinations. Thedonor and patient must have at least8 tissue (HLA) characteristics incommon to be considered a matchbut ideally should have 10.Having more donors and more ethnicdiversity on the registry increases thechance of finding matchesfor all patients.
Arkansas StatisticsSo far we have registered over 4000 donors !
Cancer WarriorsAnastacia Santa Cruz– Little Rock, AR is 15 andwas diagnosed with AML Leukemia January 28,2012. She has been through one round ofchemo.
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.
CancerWarriorsLeslie – Little Rock,AR- is 29 and wasdiagnosed withAML Leukemia justhours beforegiving birth toAyden. She hashad 3 rounds ofchemo. The babyis healthy, butLeslie still needs adonor.
Cancer WarriorsSeun Adebiyi is a 26 yearold Yale Law Schoolgraduate who is alsotraining for the 2014Winter Olympics. In June2009, he was diagnosedwith lymphoma andleukemia and is now inremission.Seun co-founded the BoneMarrow Registry inNigeria.
Cancer WarriorsMike Smyers was 66.He had AML Leukemia.Three matches werefound in a registrywith 14 geneticmarkers. One wasselected to do thetransplant. His bodyultimately rejected thenew bone marrowwhich is sadly morecommon with peoplehis age and older.
CancerWarriorsColin Flood, a 6-year-old boy fromMiddle Village, NY,was diagnosedacute lymphocyticleukemia inDecember 2011.Colin needs amatch.
Cancer WarriorsShannon Tavarez- New YorkThe 11-year-old who starredon Broadway in "The LionKing" passed away before amatch could be found. Shehad AML Leukemia.83 percent of African-American patients who needmarrow transplants dontfind matches
Cancer WarriorsTerria is currently in the fight against JuvenileMyelomonocytic Leukemia (JMML) –DONORSARE NEEDED
Cancer WarriorsTony Bliss Little Rock, AR is 45 andhas CLL. Doctors have told him he needs a transplant asap.
DKMS Donor Aaron with Joshua, the boy he saved
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 fighting chance 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 Stewart On 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 Pierce On 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 DrivesQ: 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! Start your own drive! It’s easy, free, and painless go to GETSWABBED.ORGDKMS Americas | 33 East 33rd Street, Suite 501 | New York, NY 10016 p: 866.340.DKMS (3567) | f: 212.209.6710 | e: firstname.lastname@example.org |w: www.getswabbed.org