If you are like most people, you will have a few basic questions about what it means to get tested. It's natural to be unsure and perhaps even a bit apprehensive.
Here are the answers to some of your FAQ's:
- Some facts
- What is happening?
- What is the National Marrow Donor Program (NMDP)?
- What exactly is a marrow / stem cell transplant?
- Is marrow/stem cell transplantation a proven technique?
- Which diseases can be treated by marrow transplant?
- What are the actual chances of finding a suitable marrow or stem cell donor?
- Are donors matched only against American patients?
- Who can become a marrow / stem cell donor?
- When is the blood drawn?
- How do I know if I am a match?
- What happens if I am a match?
- Okay, now tell me how my marrow is collected?
- Are there any risks or side effects?
Registering as a marrow/stem cell donor requires only a simple, buccal swab test (a sample collection of your saliva), and completion of a donor form.
The National Marrow Donor Program (NMDP) does the tissue typing, and puts the donor in a national registry. If there ever is a match between a patient and a potential donor, the donor will be contacted by the center or Donor Recruitment Group that they were tested by. The donor will be asked to provide a sample of blood at that time, that will undergo a few higher-level of testing, to determine exact compatibility of donor to patient.
Every year many South Asian patients are diagnosed with blood-related diseases. In order to survive, Vinay and many other patients need a bone marrow transplant from a matching donor. Nearly 30% of patients will find a matching donor within their families. The remaining 70% must search for an unrelated donor. Unfortunately, a very small percentage of South Asians (Indians, Pakistanis, Sri Lankans and Bangladeshis) are registered to be marrow donors. South Asians comprise approximately only 1% of the National Marrow Donor Registry.
National Marrow Donor Program is a federally supported organization that assists in locating unrelated donors.
Simply, it is the replacement of diseased blood stem cells from a health donor infused into a patientâ€™s vein just like a blood transfusion. Within four to six weeks the transplanted marrow / stem cells begin to produce normal blood cells in the patient.
Twenty years ago marrow transplants were done only as a patientâ€™s last hope. Today, thousands of lives are saved every year at approved medical centers worldwide.
Over 70 diseases including the leukemiaâ€™s, aplastic anemia, severe combined immune deficiency, sickle cell anemia and radiation poisoning are treated by marrow transplant.
The odds are 1 in 20,000 to 1 in a 100,000 in identifying an unrelated compatible marrow donorâ€¦ much higher, however, for patients of minority heritage. YOU could be that special life-giving person!
No, the patient could be anywhere in the world. Many American patients have found donors from International donor sources.
You must be between 18 and 60 years old, have no history of hepatitis, heart disease, cancer or AIDS, and sign a consent form allowing the Registry to include your HLA tissue type in its confidential files for future matching. See NMDP link below for more details: Donor information (NMDP) and Donor Eligibility Guidelines.
The blood is drawn at a laboratory in your community, or by your personal physician or at a hospital, when your are identified a s a possible match.
If you are found to be a possible match with a patient, the center in which you tested and/or the NMDP will contact you immediately and give you the option of proceeding to the next level/s of testing to insure final HLA compatibility with the patient. Who pays for these tests? Not you - the patient or his/her medical insurance does.
If the match is confirmed the transplant can be scheduled but only with your legal consent after in-depth counseling and a thorough physical examination.
Two procedures are available for stem cell collection.
1. Peripheral blood stem cell collection
(MOST current and common method)â€¦..You are given small injections of Neupogen/Filgrastin for 3 to 5 days to force your marrow to overproduce marrow or stem cells which are then released into your circulating blood. The stem cells are collected by removing blood from a vein in your arm, passing it through a filter system, which collects the stem cells and returns the remaining blood to youâ€¦a 2 to 3 hour procedure.
2. Marrow harvestâ€¦.
You are given light general anesthesia so that you feel nothing during the procedure. Only 2% to 3% of your marrow is withdrawn from the large crest of your hipbone through special sterile needles .. a 60 minute procedure. You may go home the same day.
1. Peripheral blood stem cell collection (PBSC) .....You might experience some flu- like symptoms, slight bone pain, or a feeling of heaviness during the injections. These discomforts usually disappear soon after the collection is completed. This will be discussed in detail with you.
2. Marrow harvest.....Other than the remote chance of a reaction to anesthesia or an infection the risks are minimal. This will be explained to you in detail. You may experience some soreness in the lower back.
For additional information, log onto the following NMDP link: