2013 saving lives presentation online version

Saving Lives

A Guide to Bone Marrow Donation

Who is DeleteBloodCancer (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.

DeleteBloodCancer (DKMS)

Deletebloodcancer has registered over 280,000 donors in the U.S., which allowed more than 650 patients to

receive a lifesaving transplant. Today, they are 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.

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.

How did I get involved?

On September 2011 she was diagnosed 5 hours before delivery of healthy baby Ayden with AML Leukemia.

She felt ill for many months and was told by various doctors it was either mono or pregnancy complications.

Doctors gave her 6 months to a year to live without a bone marrow transplant.

The baby and Leslie almost did not make it through the C-section birth.

Arkansas Dem-GazetteSync Magazine

The Drives

• Over 7000 swabbed in Arkansas (not counting kits ordered online)

Hendrix College Riverfest

The Drives• 87 Official Matches

Found

NEA Clinic - Jonesboro

Pulaski Heights United Methodist Church

The Drives

• 5 Official Stem Cell Collections!

Arkansas State University

Central High School

The Drives

Hillcrest Shop and Sip

Arkansas Blue Cross and Blue Shield

Yes even Hooter’s Bike Night

What can you do?• First you must meet

certain requirements:You are eligible to register if you are:between the ages of

18 and 55 in general good healthat least 4’10” and 110

lbsInformation can be found on deletebloodcancer.org

(medical guide provided at each drive)

Donor Eligibility You are not eligible if you have:• HIV• Hepatitis B or C• Kidney or liver disease• Chronic or severe neck or back problems• Epileptic or other seizure within past year• Diabetes that requires medication• Sleep apnea, breathing problems or severe asthma (daily inhalers are acceptable)• Autoimmune disorders such as lupus, rheumatoid arthritis, multiple sclerosis or

fibromyalgia Or a history of:• heart disease/surgery• strokes, including TIA• blood clotting or bleeding disorders• cancer, with the exclusion of melanoma, breast, bladder, cervical (stage O, in situ) and cured

localized skin cancers such as basal cell or squamous cell

If you are ineligible to register, there are plenty of other ways to help us save lives: Host a donor drive --- Raise Money --- Spread the word

Who can become a bone marrow donor?

Certain health prerequisites must be met.These restrictions are intended to protect thewell-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 international database.

Swabbing Procedure

• Review Requirements• Fill out the form• Wash mouth out with water• The swabbing procedure consists of 2 swabs.

Swab each inside cheek for 15 seconds in a circular motion.

• Place swabs in envelope.• You are now on the international registry until

you are 61!

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 Deletebloodcancer 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.

Swab Warriors

Free kits may be ordered online at Deletebloodcancer.org

What if I am a match? PART a.A. Peripheral Blood Stem Cell Donation (PBSC):

(70% of the time)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: (30%)

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.

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 DeleteBloodcancer 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%.


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!


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.


At least 1,000 people die each year because they cannot find a matching donor.


Only 2 percent of the population is on the national registry.

http://www.ij.org/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.


Blood cancers are the second leading cause of death of children exceeded

only by accidents.


Every 4 minutes someone is diagnosed with blood cancer and every 10 minutes, blood cancer

takesa precious life.


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.


6 out of 10 patients never receive the lifesaving

transplant they need.


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.

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.

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.cordbloodbankarkansas.org/

Some of the Heroes along the wayEmily Ingram

“There are too many young women being diagnosed with blood cancers. I was one of them. I was diagnosed on Mother’s Day while 20 weeks pregnant with my son. After other treatments failed, a stem cell transplant saved my life. Donating stem cells is a SIMPLE procedure and one of the easiest ways you can save a life. Please get swabbed today to find out if you are a match for someone like me, a mom desperately wanting to know if she can plan a future with her children. If you are pregnant, or plan on having kids one day, please learn about donating your cord blood through the Cord Blood Bank of Arkansas and give the gift of life, twice!”Emily Ingram, Age 34Survivor, Hodgkin’s Lymphoma

Leslie HarrisShe was 29 when diagnosed with AML Leukemia just hours before giving birth to Ayden. She has had 3 rounds of chemo. The baby is healthy and Leslie is currently in remission.

Anastacia Santa CruzMet her worried mother at my first drive.

She is currently in remission.

Diane JohnsonI met her at Central High School Drive.

Son Joe Johnson plays in the NBA for the Brooklyn Nets. He has hosted many drives.

She was told she needed a bone marrow transplant.

Currently in remission for Multiple Myeloma

Elizabeth FortuneElizabeth Fortune was first diagnosed with blood cancer in May 2011 and is currently undergoing treatment for her third diagnosis of cancer.

"I had found kind of a lump on the right side of my neck and thought that sometime was not right," says Fortune. "Went to the doctor and after some testing and surgeries they found the cancer. I did some chemo and radiation and then I had a second diagnosis in the Spring on the other side of my neck and they did some radiation and then in July they found the same cancer but it was in lung and so I'm currently undergoing treatment for my third diagnosis in about a year and a half."

DonorAdam O’Dell – Official Bone Marrow Donor

“I signed up with DKMS after seeing Leslie’s story on KATV in February 2012. After several months I was contacted about being a possible match. Additional blood testing showed the match was close enough to move forward with the donation process. I was informed that “my match” had been diagnosed with Leukemia and a stem cell transplant was his best option. The peripheral blood stem cell procedure does not involve surgery. I received Neupogen (filgrastim) injections for the 5 days leading up to the donation. The injections help my body produce additional stem cells and caused some minor discomfort but nothing that required pain medication or time off from work. DKMS (deletebloodcancer.org) paid for me and my wife to fly to and from the hospital where the donation was performed. I did not have to spend any money or miss any work outside of the actual day of the donation. The procedure consisted of each arm being hooked up to an apheresis machine for 5 hours but any discomfort was minimal and the nurses were very helpful.”

Fighting Red 5K: A Race to End Blood Cancer

Educate, Swab, and Run! October 5th 8:00 am at the Big Dam Bridge in Little Rock

Fighting Red 5K: A Race to End Blood Cancer

• Our mission is to educate, swab, and run for Blood Cancer Awareness!• Those who do not wish to run can still participate and donate.

Walkers welcome!• Balloon release for cancer survivors and in memoriam to those who

were lost.• Officially certified and timed race!• Prizes Available!• “Lifesaver” Award will be given to the top age groups.• Male and Female, first three finishers in the following age groups: 0-9,

10-14, 15-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70+• Medals for participants as well as long sleeve tech shirts.• Register TODAY at FIGHTINGRED5K.COM

Become a Swab Warrior!

Become a SWAB WARRIOR!Start your own drive!

It’s easy, free, and painlessgo to

Deletbloodcancer.orgDelete Blood Cancer DKMS

33 East 33rd Street, Suite 501New York, NY 10016

Email: [email protected]: 212.209.6700

Fax: 212.209.6710

Leslie is currently in remission and still swabbing just in case and for others in need.

The End

2013 saving lives presentation online version

Health & Medicine