An Urgent Plea for an Asian-Caucasian Stem Cell Donor. It could be yourself asking next time.
The argument I wish to make here is that it is extremely important for your own sake – for you personally- to be tested and become part of the international stemcell donor pool. It may end up saving your own life –or that of someone you love. The statistical odds are against us!
Our daughter Chenin-Blanc Iglowitz, age 35, is suffering from refractory, large B-cell Lymphoma, (Cancer), which has resisted two courses of intensive chemotherapy. She is in desperate need of a stem cell transplant which allows much higher doses, (10X), of chemotherapy and radiation and might save her life. The problem is that the donor must be an “HLA match”, (a special kind of tissue typing test procedure). The success of this kind of match for Chenin-Blanc is highly unlikely except with someone of mixed Asian (Sino-Asian, rather than Indo-Asian) and Caucasian descent as she is herself.
If someone in your own family ever contracts Cancer, (God forbid), or even you yourself , (for which you have about 40% lifetime odds according to the National Cancer Society), you will be very glad that you did -and that you had encouraged others as well –for those same people may have saved your own life in doing so. It takes time to process these specimens, and, should you ever require a bone marrow, (stemcell), transplant yourself, you will wish you had encouraged everyone you knew to be tested right now. Otherwise it might be too late!
You may need this very strong and effective treatment, and you will have had to find a matching donor in this very same donor database pool. At present, there are about 13,000,000 pre-typed potential donors in the world-wide bone marrow database, but most of those are Caucasians. Asians and other races are dramatically under-represented. Mixed race individuals moreover represent only about 2% of that database. But the root of the problem –even in such a large pool- is that HLA typing exposes a huge variety of possible types, (think about mathematical powers of 10). The director of the NMDP, (the Chief Medical Officer of the National Marrow Donor Program, the largest search organization in the world), estimates that the possibility of a perfect match could conceivably be less than one divided by the total number of persons in the whole world, (i.e. 1/ 4,000,000,000 or so)! He goes on to say that it is somewhat better than that for genetic reasons, but it gets harder and harder for non-Caucasians and is especially so for mixed race recipients to find a match.
How to get tested: It’s free, easy and painless and it can be done my mail!
Please either email the Asian-American donor program at http://www.aadp.org/pages/register.php or call them at 510-568-3700 to receive a free testing kit by mail. They will send you a self-test kit by mail, something like a big “q-tip” to swab the inside of your cheek, which you will then mail back. Please tell them you responded to an appeal by Chenin Iglowitz and request “expedited processing” to cut the turnaround time down from months to weeks. (Time is crucial to her!) Where the form asks for 'Additional notes', please enter "Request expedited processing for Chenin Iglowitz”. This testing is free for any minority, and mixed-race persons are the smallest minority.
We're humbly asking that anyone fitting our family profile-or any other, similar racial profile- who is between the ages of 18 and 60, have their HLA type tested to see if they if they are a potential donor for Chenin-Blanc or any other person of similar background who is in need.
This is why I said this may be in your specific interest as well as ours. It is important to find donors of a similar genetic background to our own for current or future matches –my daughter’s or yours –or your loved one’s! And it is important to get them into a searchable database.
(If you wish to be tested for Chenin alone, please contact me at firstname.lastname@example.org to arrange for private testing at www.bonemarrowtest.com . This step is unnecessary if you are willing to help others in need like her.)
Having registered and submitted your sample, your HLA type will be determined and recorded into the national “Be a Match” database. If you are a match for Chenin (or another individual in need of this lifesaving treatment), the donation process is relatively easy. In over 70% of the time, it involves sitting in a donor chair for about 4 to 6 hours at a nearby hospital where they insert a needle into each arm. Your blood is then circulated through an “aphoresis machine” and all but your stem cells, (a few milliliters of specialized white cells), is given back to you. The risk is just about what it would be in donating blood, and that is exceedingly low.
If you get tested, it would help us that you expedite the process by sending an email to me, Jerry Iglowitz, Chenin’s father, at (email@example.com), as it will allow me to alert her doctors to check the database frequently. In the email, please include the location where you were tested, and testing date. The reason for this is that the national database usually takes a few weeks to be updated with a new potential donor's test results. Again, for Chenin, time is of the essence. They will be expediting these samples so her doctors –or somebody else’s doctors will be able to urgently retrieve possible matches."
Thank you –these are not sufficient words,