Please join our fight!

SWAB FOR SAWAB is a worldwide call to action on Friday, May 31st from 9:00 PM to 12:15 AM across the United States and United Kingdom to enroll as many people as possible from all backgrounds in the bone marrow & stem cell registry. Over the past few months, a handful of young members of our community (scroll down to learn more about them) were diagnosed with aggressive forms of leukemia and other illnesses that require bone marrow or stem cell transplants. Unfortunately, none of them matched with members of their families or any of the other 20 million people in the registry.

The chances of matching with someone are highest where there's overlap in ancestry but communities of color—including South Asian, Black or African American, Arab, and Latinx people—are underrepresented in the donor pool. Only 20% of the 20 million registrants reflect communities of color, and the unfortunate reality is that the majority of people in our community will not find a match unless we can significantly increase this number. You can step up to help these patients in need.

We are urging everyone who sees this to come out and get registered. Scroll down to find a drive near you in the next couple of weeks or click the link to register online. The process is free, easy and only takes about 5 minutes. All it takes is a simple cheek swab to join the registry and potentially save someone’s life.

We know there is a lot of misinformation about bone marrow donation, and we want to help dispel those myths:

  • Bone marrow or blood stem cell donation is not organ donation. Bone marrow, regenerates, so a donor is not giving away a part of themselves.
  • As a donor, you are only called to donate when you are a matched to a patient based on the DNA sample provided during registration. For these patients, many times a bone marrow transplant is the only treatment that will give them a second chance to live.
  • We don’t store bone marrow. We do store the information from the cheek swabs and that is done through a secured donor identification number that conceals donor identity. No third party has any access to your personal identification information such as name, DOB, address etc.
  • DKMS is HIPPA compliant; we do not and cannot sell your personal identity or health information.
  • There are strict medical guidelines put in place to ensure the safety of the donor. A thorough medical history and exam makes sure that it’s safe for you to donate.
  • Financial costs are covered by DKMS. This includes the medical procedures and travel cuts for you and a guest. And if it’s needed, costs after donation.

What does it mean to be on the registry? It means that someone has taken a step forward to help a patient who is suffering from a blood cancer or blood disorder. Once a person has swabbed their cheeks and returned the kit, the swabs are sent to a medical lab where it is tested for HLA typing profile. Because it’s so hard to be a match, there is a 1% chance you will be called.

If you’re fortunate enough to be in that 1%, you would go through a series of health screenings to ensure the donation will not pose any health risks to you or the patient. Once that is confirmed, you would go to a partner transplant center for the donation. DKMS team member will be with you every step of the way guiding you through the process and addressing your concerns.

Meet Our Patients

Liyna

Liyna is a 29 year old journalist from Los Angeles who is fighting an aggressive leukemia since December 2018. Liyna continues to receive chemotherapy as an outpatient with frequent doctor's appointments throughout the week. While she is showing progress, the chemotherapy will only keep her leukemia at bay for so long as it will eventually begin to lose its effectiveness. Because of that, a blood stem cell transplant remains her best chance of a cure and now, time is of the essence. We haven't found a perfect match for Liyna yet, but there is still a chance for people to join the donor pool and potentially help Liyna or someone else in desperate need of a transplant.

Arham

Arham is 6 months old and was diagnosed with two forms of leukemia when he was just three months old, ALL and AML. Since the diagnosis, Arham has endured complications from chemo therapy including cardiac arrest and has been in and out of ICU. Sadly, he has no matching donors in the database and does not have any siblings. To make matters that much desperate, Arham‘s mother almost died during childbirth which resulted in her being unable to birth any more children in the future. Doctors working on Arham’s case would like to move him to transplant as soon as possible. He is currently being treated at Texas Children’s Hospital in Houston, TX. Arham is of South Asian descent. Both of his parents descend from Pakistan.

Alesha

2 years old , Alesha Kajani, is in need of a bone marrow transplant. She was diagnosed with bone marrow failure at just 12 months old. Alesha does not have siblings and relies on an unrelated donor to give her a second chance at life. Her parents struggled to get pregnant for 8 years. Alesha has undergone many tests, gets poked quite often and receives platelet transfusions at least twice a week. Her white cells and platelets count are critically low, causing her to stay indoors. Before her diagnosis, she was constantly getting sick but always stayed very calm and patient.

Rosmin

Rosmin

Rosmin is 54 years old and from Atlanta, Georgia. She was diagnosed with myelodysplastic syndrome (MDS), which is a considered a cancer that occurs when the blood-forming cells in the bone marrow become abnormal. This leads to low numbers of one or more types of blood cells. A bone marrow transplant is the only cure for this type of cancer. Currently, there is no matching family members. Because of Rosmin’s south asian ethnicity, her chance of finding a lifesaver is even harder. You could be the one to give Rosmin a second chance!

How Bone Marrow Donations Work

Two Ways to Potentially Save A Life

Donation

If you are one of the lucky ones that becomes a match for a patient, there are two ways you can donate and help that person get a second chance at life. The patient's doctor will select the method that promises the best outcome for the patient, so we ask that potential donors understand both procedures and be comfortable moving forward with either one.

Peripheral Blood Stem Cell Donation

This is the donation method used in 75% of cases. Peripheral Blood Stem Cell (PBSC) donation is a non-surgical, outpatient procedure that collects blood stem cells via the bloodstream. It takes about 4-8 hours on 1-2 consecutive 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 pelvic bone using a syringe.

 

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 4 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.

Possible Side Effects & Recovery

While taking filgrastim, you may experience flu-like symptoms such as headaches, bone and muscle aches and fatigue. Most side effects will begin to subside within 48 hours of donating. A majority of donors report a full recovery within 1 week.

We check up with you regularly after donation to make sure you are recovering properly. If you are not, we will arrange any necessary follow-up care.

 

Possible Side Effects & Recovery

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 are not, we will arrange any necessary follow-up care.