Hodgkins Lymphoma Awareness

My Journey Battling Cancer & Graft vs. Host Disease
Fighting for my life each day against the odds

How To Help Save A Life

The National Marrow Donor Program (NMDP) connects patients with donors.  Bone marrow and cord blood transplants are a life-changing treatment for people with leukemia, lymphoma and many other diseases. For many patients, a transplant may be the best — and only — hope for a cure. When patients learn they need a transplant, they turn first to their families to find a donor. But 70% of those patients won’t find a suitable match in their family. They depend on bone marrow or cord blood donors like you.  http://www.marrow.org 

As most of you know, I have been a member on MySpace for a while now. I have had many people add me to their friends list. The support I have received is amazing. A man found my page and contacted me yesterday.  His name is Akeem.  He is an active volunteer for the local Bone Marrow Donor Program and other Cancer/Leukemia related events. He started an awareness campaign to help save lives of those who are dying because they cannot find a donor for a bone marrow transplant.  Akeem is trying to spread awareness to others how important it is to get on the list and help save lives.  Especially the need for diverse racial and ethnic communities. Below you will find some statistics that Akeem has on his page.  Thank you for spreading awareness Akeem.

African-American "Swab and Save a Life" Campaign

*10,000-15,000 people in the U.S. each year have a disease that could be treated with a Bone Marrow Transplant, but have no matched sibling.

*Only 30 percent of patients in need of a Bone Marrow Transplant find a matched donor in their family. The other 70 percent may turn to the NMDP to search for an unrelated donor or cord blood unit.

*About one-third of these patients try to find an unrelated marrow donor but only 25% of them (9% of the total who might benefit) actually get a transplant. The odds are even worse for African-American and other ethnic minority groups.

WHY RACE MATTERS
Race matters when it comes to finding a matching donor.African-American patients are most likely to find the best match within their own race or ethnicity. By increasing the diversity of the NMDP Registry we can have a positive impact on these figures so that more patients are able to find matching donors.

Compared to other race groups, African Americans are least likely to find at least one potential match.

African Americans only have a 59.5% likelihood of finding at least one potential match on the NMDP Registry. For Caucasians its 87.5%

African Americans who are currently registered are least likely to be available when called to donate (Only 40.7% are available). (Caucasian = 69.5%)


DISPELLING THE MYTHS
Myth #1: Bone Marrow needs to be removed when joining the registry. (Only a cotton swab from the inside of your mouth.)

Myth #2: There are enough people already on the NMDP registry. (More than 6 Million potential donors, yet only 450,000 are African Americans. Frequently, minority patients will find a match from someone who shares the same ethnicity.)

Myth #3: Bone marrow donations involve surgery. (Most of todays donations do not involve surgery. They mostly use peripheral blood stem cells (PBSC) a non-surgical procedure that removes a donors blood through a sterile needle in one arm. The blood is passed through a machine that separates out the cells used in transplantation. The remaining blood is returned through the other arm. Only if the Doctor thinks its best for the patient, the Donors may be asked to donate actual marrow, which is a surgical procedure.)


SAVE A LIFE/JOIN THE FIGHT
4 Easy Steps to Register
(Must be 18-60 years of age)

1.Attend a drive or go to a local donor center.

2. Complete a short health questionnaire.

3. Sign a consent form giving permission to add your information to the National Marrow Donor Program Registry.

4.Use the Cotton Swab (oral) procedure (swab 4 areas of your mouth to collect cell tissue).


BONE MARROW COLLECTION

1. Potential donors will receive an extensive physical exam.

2. Bone Marrow collection is scheduled at a local hospital.

Most Common: PBSC DONATION

To increase the number of blood-forming cells in the bloodstream, you receive a daily injection of a drug for five days before the collection.

Blood is then removed through a sterile needle in one arm and passed through a machine that separates the stem cells.

The process is similar to donating plasma. The remaining blood is returned to you.

PBSC Side effects and recovery

You may experience headache, bone, or muscle aches for several days before collection, a side effect of the injections.

These effects disappear shortly after collection

BONE MARROW DONATION
Surgical procedure. While receiving anesthesia, a special needle is used to withdraw marrow from the back of your pelvic bones.

Side effects and recovery

Some soreness in your lower back for a few days or longer.

Most donors are back to their normal routine in a few days.

Your marrow is completely replaced within four to six weeks.


Where is my donor?

My donor was found through the NMDP (National Marrow Donor Program.) The NMDP follows strict
confidentiality standards to protect the privacy of both the patient and donor. According to their standards, the patient and donor cannot learn each other's identities for at least the first year after transplant. Some centers do not ever allow the patient or donor to learn each other's identities. After transplant, the NMDP may help me and my donor to communicate without knowing each other's names. For example, I may be able to send cards and letters through the transplant center and donor center coordinators. They will check the letters to be sure no identifying details are shared. These rules vary from center to center. Some centers do not allow the patient or donor to have any kind of contact at all. After one year, many centers allow the patient to meet their donor if both sign release forms. In this case, the NMDP will let me know how to contact each other. Some centers do not allow the patient to have contact with the donor at any time. In my situation, I learned that my donor is from Europe. I had to sign consent forms stating that my donor may have been exposed to Mad Cow Disease. But, I know she isn't sick because she had to go through a whole bunch of tests to make sure she is very healthy. Information shared is only supposed to be age and gender. All I know is that my donor is a 24 year old female that has traveled between Germany and Egypt in the past year. My tissue typing is very unique, like I was told before. Therefore, it is a mismatched unrelated donor -11/12 antigens match. It's a good match but not perfect, meaning that my body could reject her stem cells. The whole reason for this transplant is to give me the chemo which will suppress (wipe out) my immune system since it is weak and then replace it with my donor's immune system which is healthy. Hoping that my body accepts the donors cells and builds a new immune system in my body to fight the can
cer cells and put me into remission. 

 

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