Have a question about DKMS and bone marrow donation? It's likely you'll find the answer below.
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I registered with Delete Blood Cancer? What is DKMS?
In 2016, Delete Blood Cancer DKMS changed it's name to DKMS as part of a global rebranding of DKMS offices around the world. Everyone who registered with Delete Blood Cancer remains on file with DKMS and on the national registry. While we have rebranded most of our materials to reflect our new name, you may still encounter our Delete Blood Cancer name in our email addresses and on other materials.
I think I registered, but I’m not sure. Should I do it again?
We ask that all potential registrants make sure they have NOT registered before either with us or any other organization in the U.S. that registers potential bone marrow donors. Registering twice can result in being listed on the registry twice—you are listed by donor number, not name—which could impact match results for a patient.
If you are not sure, please call 1-800-MARROW2 (800-627-7692) to check if you’re listed on the national registry. If you are, there is no need to register. If you’re not, we’ll gladly add you to our lifesaving team!
What is the Be The Match Registry®?
The Be The Match Registry® is the national bone marrow donor registry in the United States, operated by the National Marrow Donor Program (NMDP.) DKMS is a bone marrow donor center officially affiliated with the NMDP, so every person we register is listed on the Be The Match Registry®.
Can I register for a specific person?
No. When you register with DKMS, you are added to the national registry where any patient searching for a donor can potentially match with you. Registering is a serious commitment that requires you to be willing to donate to any patient in need. If you only want to see if you can donate to a particular person, you must be tested privately through the patient’s transplant doctor.
What happens after I register?
After you complete your registration at a drive or online, we input your information into our secure donor database and send your swabs to a laboratory for HLA (human leukocyte antigen) typing. HLAs are protein markers on your cells that are used in matching patients and donors.
Once your HLA typings are complete, we list you anonymously—by donor number and HLA type—on the Be The Match Registry® operated by the National Marrow Donor Program. Then, you will receive a letter from us letting you know that you are officially listed and available to doctors who are searching the registry to find matches for their patients.
“I never thought I’d be contacted, but when I was the decision was an easy one. Ultimately, it’s just a few days of your time to save the life of another person . . . a few days for an entire life.” —Bennett, donor
I registered a long time ago. Do I need to re-swab to stay registered?
No, once you’ve registered and received confirmation that you are in our database and on the national registry, you’re all set. Once registered, you will remain on the registry until age 61, unless you ask to be removed earlier.
I’m over 55, why can’t I register?
The age limit is not meant to discriminate. Medical guidelines have been established to protect the safety of the donor and provide the best possible treatment to the patient. With age comes a small increase in the risk of side effects from anesthesia. Additionally, research shows that cells from younger donors lead to more successful outcomes for patients.
I’m under 18, why can’t I register? Can’t my parents sign the consent for me?
18 is the age of legal consent in the U.S. for voluntary medical procedures like bone marrow donation. A guardian or parent cannot provide consent in these instances.
I have sleep apnea? Can I still donate?
If you have sleep apnea, you can donate through Peripheral Blood Stem Cell (PBSC) donation only. Bone marrow donation is a surgical procedure that requires anesthesia. Sleep apnea is a respiratory disorder and anesthesia depresses respirations.
Why are there weight restrictions for potential donors?
There are medical guidelines for bone marrow donations that have been established by the National Marrow Donor Program (NMDP) to protect the safety of the donor and provide the best possible outcome for the patient. The height and weight guidelines for donors allow for a Body Mass Index (BMI) of up to approximately 40. Possible complications with donors that have a higher BMI include increased risk for anesthesia for bone marrow donation and comprised venous access for PBSC collection.
What are the chances I’ll get called to donate?
You could be called as a potential match within weeks of registering. Or, perhaps it will take years. There is a chance that you may never be called, but there is also the chance that, if you do get called, you are the ONLY one who can save that patient’s life.
"It's just amazing to me that I can live again. I have one more chance at living – to actually be able to do something." —Darian, transplant recipient and survivor
I moved. How do I update my personal details?
Right here on our website or by phone. Call us on 212-209-6700 or click here to update your information.
How do I host a donor registration drive?
It’s easy. You pick a date, time and location. We do everything it takes to inspire your team to get involved. A dedicated DKMS point person works with you to organize the drive and provide you with all the assets—digital, print, video—needed to enlist, educate and inspire volunteers; promote the drive to your internal and external audiences; and register potential lifesavers on drive day. Get started here.
Is donating marrow the same as donating blood?
No. When you register with DKMS, you are making yourself available as a potential marrow donor for a patient in need of transplant. If you do match with a patient, you will be asked to donate marrow or blood stem cells in procedures that differ from donating blood. You can remain a regular blood donor after registering as a bone marrow donor, however if you do match with a patient, we ask that you don’t give blood for a month prior to donation.
What is the difference between “bone marrow” and “blood stem cells?”
When you register, you have the potential of donating either bone marrow or blood stem cells, depending on the needs of the patient. Bone marrow is the spongy tissue inside your bones that produces blood stem cells—the cells in your body that produce red and white blood cells, as well as platelets. These blood stem cells also exist in your bloodstream, where they are called peripheral blood stem cells (PBSC). There are different procedures for donating marrow and blood stem cells.
What are the two ways to donate?
You may be asked to donate via peripheral blood stem cell (PBSC) collection or bone marrow donation. The patient’s doctor chooses the method that promises the best outcome for the patient, that's why we ask that all registrants be comfortable moving forward with either method.
Peripheral Blood Stem Cell (PBSC) Donation
This is the donation method used in 75% of cases. PBSC donation is a non-surgical, outpatient procedure that collects blood stem cells via the bloodstream. During the procedure, your blood is drawn through one arm and passed through a machine that filters out the blood stem cells. The remaining blood is returned to you through your other arm. To increase your blood stem cells prior to donation, you will receive daily injections of a synthetic protein called filgrastim on the four days leading up to and on the morning of the procedure. The actual donation can take from 4-8 hours over the course of 1-2 days.
Bone Marrow Donation
This is the donation method used in about 25% of cases, generally when the patient is a child. It is a 1-2 hour surgical procedure performed under anesthesia, so no pain is experienced during the donation. Marrow cells are collected from the back of your hip bone using a syringe.
"The medical care that DKMS provided to my daughter was superior. The donation and medical clearance was done at a world-class hospital. It was a great comfort to me to know that she was in good hands every step of the way." —Mother of a donor
Does donating hurt?
Both donation procedures will result in some level of discomfort, but most donors report that any pain experienced is easily eclipsed by the positive feelings of knowing they are possibly saving a life.
Possible Side Effects & Recovery of PBSC
While taking filgrastim, you may experience flu-like symptoms such as headaches, bone and muscle aches and fatigue. Most side effects should subside within 48 hours of donating. Your stem cells replenish within 1 week.
Possible Side Effects & Recovery of Bone Marrow Collection
You may experience some pain, bruising and stiffness for up to two weeks after donation. Within a week of donating, you should be able to return to work, school and many regular activities. Your marrow will completely replenish itself within 3-6 weeks.
We check up with you regularly after donation to make sure you are recovering properly. If you're not, we'll arrange and pay for any follow-up care.
“The thing that struck me most about the whole process was that, literally hours after the donation completed, the thing I wanted most in the world was to have a chance to do it again.” —Anne, Donor
Can I choose the donation method?
The donation method is selected by the patient’s doctor based on which they believe is best for the patient. That’s why we ask that you be comfortable with the prospect of peripheral blood stem cell collection and bone marrow donation. If you become a match for a patient and are not willing to donate through one of these methods, please notify your coordinator immediately.
Is bone marrow taken from my spine?
No. The marrow is extracted from the back of your pelvic bone using a special syringe.
Will I permanently lose my stem cells?
For either donation procedure, the amount of stem cells collected is only a fraction of your body’s total. Your donation does not weaken your immune system and the cells will naturally replenish themselves within a few weeks.
How are patients matched with donors?
A cheek cell sample is collected at registration. The sample is tested for the HLA tissue type and added to the national Be The Match Registry®, so doctors can search and find a matching donor for their patient.
To learn more click here
What is human leukocyte antigen (HLA) typing?
Human leukocyte antigen (HLA) typing is a DNA-based tissue test used to match patients and donors for bone marrow transplants. HLA are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. The closer the match the better the chances the patient’s body will accept the donated cells and allow them to grow and make new healthy cells.
To learn more click here
What happens if I match a patient?
More testing will need to be done to determine if you are the best suitable match. This includes completing a health history questionnaire, providing blood samples and undergoing a physical exam. A DKMS representative will walk you through each step of the process and will be available to answer any questions you may have.
To learn more click here
Do ancestry and ethnicity affect matching?
Heritage is a very important factor. Like hair and eye color, your HLA type is inherited, so the best matches generally happen between patients and donors who share the same ancestry.
"You’re taking a part of yourself and giving it to somebody else while you are still living to save them. In my mind, why wouldn’t anyone do that?" —Dianne, donor
Am I the only match?
It is possible for a patient to find multiple potential matches. However that information is known only to the patient’s doctor, not to us. The doctor will select the best donor based on how close the HLA match is, as well as the donor's age, sex, size, health history, availability and other factors. If you are contacted as a potential match but not selected for donation, we will inform you. You will remain on the registry to be available for other searching patients.
What makes a good match?
Doctors generally look at 10 specific HLA markers to determine a match. Most require at least a 9 out of 10 match, but a 10 out of 10 is best. The closer the match, the better the chances that the patient’s immune system will recognize donated cells as its own and allow them to grow and make new healthy blood cells. We generally don’t find out exact patient-donor HLA match ratios.
How long do I have to make a decision?
When you registered as a bone marrow donor, you made a serious commitment. You always have the right to change your mind. However, a late decision to NOT donate can be life-threatening to a patient, so we ask that you consider your decision seriously upon learning you are a potential match. Talk to family, talk to friends, talk to your DKMS coordinator, who can answer all your questions and even connect you with a past donor who can give you firsthand insights into donation.
Bone Marrow Transplants
What is a bone marrow transplant?
A bone marrow or blood stem cell transplant is a potentially life-saving treatment for patients fighting blood cancers like leukemia and lymphoma as well as other blood diseases like sickle cell. A transplant replaces the patient’s unhealthy blood stem cells with healthy ones from a donor like you. Prior to transplant, a patient undergoes high dosages of chemotherapy and possibly radiation therapy to destroy all the diseased cells in their body as well as their immune system so that it can’t attack the donated cells after transplant. During transplant, the donated cells are infused into the patient and move through the bloodstream into the bone marrow, where they begin to grow and produce new healthy blood cells in a process called engraftment.
What diseases do bone marrow transplants treat?
Bone marrow transplants can be the best or only treatment for patients fighting blood cancers like leukemia, lymphoma and myeloma as well as approximately 70 other conditions including sickle cell disease, severe aplastic anemia, immune system disorders and inherited metabolic disorders. Nearly 20,000 Americans need bone marrow transplants every year. (source: U.S. Dept. of Health & Human Services based on data from NMDP)
“If I did not have a bone marrow transplant, I would not be here today.” —Kerri, survivor
A friend/relative needs a bone marrow transplant. How can I help?
Learning that a loved one may need a bone marrow transplant can be an overwhelming moment. Close friends and relatives of the patient want to help, but don’t always know what they can do. DKMS provides a positive way to get involved: organizing bone marrow donor registration drives to search for donors, rally community support and connect families that are spread across the country. We’ll support your efforts with social media campaigns to create a movement behind your cause. To learn more about the support we can provide you, please contact us at firstname.lastname@example.org or at 1-866-340-3567.
Will I be compensated for the time I take off from work?
If your employer does not provide paid time off for donation, DKMS has a financial assistance program for lost wages compensation. If you qualify for assistance, your coordinator will give you more information about applying for aid.
Will my donation date change?
Donation depends on both your health and that of the patient. In the time it takes for you to go through testing and the physical exam, the patient’s health can take a turn, delaying or even canceling donation. We will always keep you informed of any changes and continue to accommodate your schedule to the best of our abilities.
Where will I donate?
We work with a number of hospitals across the country. In many cases, we will ask you to travel. We arrange and cover the costs for travel and accommodations. In most cases, you will donate at the same facility where you will have your physical exam.
When will I donate?
In most cases you will be asked to donate 1 to 3 months after the confirmatory blood test. We will always try to give you 3 to 4 weeks notice and accommodate your schedule.
What is DKMS’s Non-Profit Status?
DKMS is classified by the Internal Revenue Service as a non-profit 501(c)(3) organization and a 509(a)(1) public charity. We are exempt from federal income tax and all contributions made to our organization are tax-deductible to the extent allowable by law. A copy of the IRS letter of determination declaring our tax-exempt status is available upon request and you can click here to see our full financial disclosure.
Do you provide tax receipts for gifts?
Yes. When you provide a valid email at the time of making a gift, you will receive a digital receipt that you can save or print out for your records. You may also request to receive a receipt via U.S. mail by contacting email@example.com or calling 1-866-340-3567.
Who pays for the stem cell or bone marrow donation?
The patient’s health insurance covers the costs of pre-donation exams and the donation procedure itself.
Why should I give to DKMS?
It costs us $65 dollars to add each donor to the national registry. As a non-government funded organization, we rely solely on contributions from individuals, foundations and corporations to cover these costs and keep registration free for all who are willing to save a life. 100% of all gifts go directly toward our donor registration costs.