My name is Deena Alansky, and I lost my brother Rand to leukemia on Feb. 18, 2004. A matching bone marrow donor was his last hope for survival, but I was not a match, and NOT ONE PERSON in the world’s marrow registries was a match for him, either. (Being a match is based on your HLA tissue type, and NOT blood type, which is a common misconception.) Siblings have only a 25% chance of matching, so most patients must rely on the kindness of a total stranger in the registry to save their life! As more people join the marrow registry, more lives will be saved.
When you join the National Bone Marrow Registry, you become part of a world-wide network of volunteers with the potential to save a life if you are ever found to be someone’s miracle match! Every year, approximately 35,000 people are diagnosed with leukemia and other blood-related diseases, many of whom could benefit from a bone marrow transplant, but only about 10% will receive one. Over 70 diseases can be treated with bone marrow or stem cell transplants, but that can only happen when a matching donor is found.
It is indeed a tragedy that so many patients who could be saved
by a bone marrow or
stem cell transplant cannot be treated because a matching donor cannot be found.
In the Pittsburgh area, you can join the marrow registry for FREE through any branch of the Central Blood Bank. Anyone in good health between the ages of 18-60 can join. The test is just a cheek swab, and if you’re ever found to be someone’s lifesaving match, you might be the only matching donor found in the entire world-wide registry!
You can join the marrow registry for FREE ONLINE at:www.dkmsamericas.org. Register online, and they will send you the cheek swab testing kit in the mail. Swab your cheek at home, mail back the kit, and you've joined the registry! It's never been easier to join, and someday you might truly help save a life! DKMS provides FREE testing kits for anyone in good health between the ages of 18-55. You can still join if you're between 56-60, but you will have to pay the lab fee for testing. (Since DKMS pays for thousands of these tests a year, they must limit the free kits to those under 55 in order to minimize costs.)
What happens if you're ever found to be a matching donor?
There are two methods of donation being used today: • Peripheral Blood Stem Cell Donation (PBSC) is performed 75% of the time.
• Needle Aspiration under general anesthesia is performed 25% of the time.
Peripheral blood stem cell donation (PBSC) is the most common way in which people donate, 75% of the time. The same life-saving blood stem cells found in bone marrow also exist in our blood. These stem cells can be filtered from the blood through a process called apheresis. During apheresis, your blood is circulated out one arm and back in the other, passing through a machine that separates out only the stem cells. The donor receives a daily injection of a drug called Filgratim for five days prior to donation. This increases the number of stem cells released from the bone marrow into the blood stream, thus dramatically improving the patient's chance of survival. Filgrastim can cause mild flu-like symptoms, such as headaches, body aches, etc., but there are no lasting effects. All Filgrastim-related symptoms are temporary and stop after the donation is completed, and the donor is no longer receiving Filgrastim.
Needle aspiration is becoming less common, but is still used in 25% of cases, usually when the recipient is a child. While under anesthesia, doctors use a hollow needle to remove a small amount of marrow from the back of your pelvic bone. The procedure lasts between 45 and 90 minutes. Marrow is constantly regenerating itself and is replaced in 4 to 6 weeks. The marrow donation site will feel sore and achy, but the procedure does not prevent you from going about your daily routine, and the soreness diminishes over time. (Your doctor will prescribe pain medicine, as well.) Most people go back to work in a day or two.
Imagine being someone's MIRACLE MATCH! Imagine being a marrow or stem cell donor and knowing that you might have just saved someone's life, and you might have been the ONLY MATCH in the entire registry! Remember, there was NO MATCH for my brother, and there is still no match for 17 year old Amy of Amy's Army, and we've been looking for her match since 2003!. (Although, she remains in remission and is doing very well.)
If you are unable to join the marrow registry due to age or health restrictions, you can still help
in
a really
big way by spreading the word about the registry! Education is the key to saving lives.
The more people who know about the registry, the better! People can't join unless they know it exists. I know that sounds simplistic, yet I myself had never heard of the registry until my brother was first diagnosed with leukemia in 2003. If someone had TOLD ME about this registry years earlier, I would have JOINED years earlier! Education is vital to increasing the number of people in the database, and that will translate into more lives being saved. Together, we can help to educate our family and friends. Together, we can make a difference in this world! Thank you for reading about the marrow registry. I truly appreciate your time.
How to Join the Registry in the U.S. & Canada *All marrow registries share their databases with each other, so that doctors
can
search for a matching donor anywhere in the world that has a registry!
