While visiting Boston on business, I learned some shocking news this past weekend. My good friend Sonia was diagnosed with Acute Myelogenous Leukemia (AML) about 10 days ago. She is currently undergoing chemotherapy. She is 24 and in urgent need of a bone marrow transplant. I am still in shock and having a hard time absorbing this. Since I have known her, I cannot imagine her as being anything other than the cheerful, always smiling, bollywood-movie-loving, happy and positive person that I have known her to be. She is an active member of the South Asian community and many may recognized her contributions as a board member of NetSAP Boston. I pray she finds a donor soon.
Team Sonia – Sonia’s brother Sumit Rai, family and friends are organizing drives today and in the next few weeks. Please take the time to help spread the word about the drives and join the NMDP registry if you have not already done so. You can visit www.curesonia.org, or visit their Facebook page.
As you may be aware from our previous posts on the topic, the National Bone Marrow Registry (NMDP) is in dire need of more ethnic donors. South Asians, as well as any minority, and especially people of mixed ethnicity are needed. Sonia is currently receiving excellent care at Massachusetts General Hospital in Boston, but in order to survive beyond the next few months, she requires a bone marrow transplant. Most matches occur within ethniticty and increasing the number of South Asians registered as potential bone marrow donors will help Sonia as well as many others who are searching.
Among the 7 million registered donors currently, approximately, only 2% are South Asians. Ethnic Minorities have a 30-40% chance of finding a match from the existing NMDP registry. Caucasians have an 80% chance of finding a match from the existing NMDP registry [link]. The saddest truth of this process for a patient is that finding a match is not sufficient. I attended a talk by a Samar representative who mentioned a South Asian patient. After a lengthy search, he found a match and moved to the Seattle area. Unfortunately just before the donation process, the donor backed out. Another patient had 4 matches that did not work out.
Approximately 50% of all Ethnic Minority donors will NOT push through with donating if called as a possible match for a patient. (whether because they are unreachable, they say “no”, or become medically ineligible). Whereas over 70% of Caucasian donors WILL proceed with donating if called as a possible match [link].
What can you do?
LEARN
Learn about AML and what committment it takes to be a donor. The process has gotten a lot simpler over the years. It does not take a blood test or a needle, only a simple, non-invasive cheek cell sample to become registered. If you are contacted as potential match, learn about what is involved. Learn about some of the facts and myths.
JOIN
What Sonia and others like her need are committed and available donors. This holiday season, spend a small amount of your time and be the miracle someone is praying for. Find a drive organized by Team Sonia. For the most current information, visit their Facebook page. Here are some upcoming events I found starting today. Team Sonia plans to organize more events on the East Coast as well:
Bone Marrow Donor Registration Drive: Nachi’s Birthday. Where : 25 Lusk Street, San Francisco, CA. When : Today from 18:00 to 21:00
Bone Marrow Donor Registration Drive: Darbar-E-Khalsa. Where : Pomona Fairplex, 1101 W. McKinley Ave, Pomona, CA. When : Saturday 25 December from 11:00 to 17:00.
Bone Marrow Donor Registration Drive: Fremont Gurdwara. Where : Fremont Gurdwara, 196 Gurdwara Road, Fremont, CA. When : Sunday 26 December from 10:00 to 14:00.
Bone Marrow Donor Registration Drive: El Sobrante Gurdwara. Where : El Sobrante Gurdwara, 3550 Hill Crest Road, El Sobrante, CA. When : Sunday 26 December from 10:30 to 14:00.
Bone Marrow Donor Registration Drive: Livermore Temple Where : Shiva-Visnu Temple, 1232 Arrowhead Ave, Livermore, CA When : Sunday 26 December from 11:00 to 15:00
Bone Marrow Donor Registration Drive: Sunnyvale Temple Where : Sunnyvale Temple, 420-450 Persian Drive, Sunnyvale, CA When : Saturday 1 January 2011 from 11:00 to 17:00
Bone Marrow Donor Registration Drive: Los Angeles New Years Drive Where : Valley Hindu Temple, 18700 Roscoe Blvd, Northridge, CA When : Saturday 1 January 2011 from 11:00 to 17:00
or learn about how to join and become registered.
STAY IN TOUCH
I gave my email address when I joined, and now I get a monthly newsletter which also contains my Donor Center and Record information and a convenient link to update my contact information. If you have already registered, stay committed to this cause. Remember to update your contact information.
SPREAD THE WORD
Even if you are already registered, you can still do more. Email, blog, tweet about it and spread awareness using your favorite networking media.
I hope Sonia finds a donor. Lost my best friend to Leukemia when we were 20. Breaks my heart reading this. Stay strong.
So sorry to hear this. Since I’ve always lived in a city that doesn’t hold marrow registration drives, I’ve tried with little success to get the self-testing kit. Over and over, I’ve gone through the process of creating accounts, entering information and providing credit card information to get nothing in the mail. I’ll try once more, but do want to know if others have gone through this.
Speaking of Something Is Broken: I can’t seem to log in to my “maitri” account using my OpenID, which is why I had to login with my Twitter credentials.
I totally agree w/ you Maitri! I find the best way to convince my friends to do anything is if I make it as easy as possible for them – so I asked the local Asian American Bone Marrow org if I could get 10 kits to sign up my family and friends. I never got anything in the mail though I pestered for a while, and now I’m getting annoying e-mails for when they need volunteers for an event. Organizers need to get their act together.
My friend Kristeen who was a big supporter of the Vinay campaign, and worked Asian American Marrow drives (way long ago before I asked for the kits) was just called in this past month to donate marrow. She went to the hospital, donated and everything. I am proud of her for walking the talk. It’s so important that people not just sign up for the registry but to follow through and donate as well. There’s so few South Asians in the registry, and such a huge racial health disparity. We blog about situations like these on a yearly basis, but on the same time it’s because the gap continues to be so large and people are still not signing up.
I really sorry to hear about your friend. I don’t live close to any of the locations for the drive, but I am a registered with the National Bone Marrow Donation Program. I live in San Diego. I don’t know how the registry works in the searches it does. But if you need more info from me e-mail me at suche2930@gmail.com.
All searches are based on a single registry at NMDP. So you’ve done your part already. Although make sure your contact information is up to date.
another way to get visibility/volunteers would be to post on sulekha & reach out to the ISAs. good luck
Sorry about your friend. I hope she finds a match soon.
I am happy to put up posters at our local temple and desi stores if there is one available. I can’t access the webpage; it redirects to Facebook.
All needed information is available on the Facebook page that the website redirects to. Check there for the most current information and what help Team Sonia needs with the ongoing drives. At the moment they are looking for:
I wish I could sign up to be a donor but 6 months ago I was diagnosed with an autoimmune disease. I guess leukemia and autoimmune diseases are just too close. I’ll pass the info on for sure. I am sad that I cannot try to donate for her – we have the same name.
Did you ever get an update on baby Maya?
Almost everybody I know is on the registry. I hope there is only one registry for the entire country and not broken up into regions.
Yes, there is only one registry at NMDP.
I am in the registry and proud of it. I still haven’t gotten a request but am willing to donate if needed.
Getting signed up for the marrow registry is so easy – just a simple swab in the inner mouth/cheek/gum or something like that. I don’t know if the procedure has changed and is even more easy, though.
Hope Sonia feels better soon.
Is there a registry or international registry that includes Canada, India, Singapore, etc? That might be helpful.
Try http://www.onematch.com! They have kits mailed to you, you take the swab and mail the kit back!
I hope if you asked your reader and publish about natural herbs and to be believe in nature medicine, to eat and sleep well, by dieting proper food and not fastfood, and avoid luxurious style will never cause any diseases. The nature has given many more gift that still we people lacks the knowledge and never try to believe about natural thing surrounding to us.
It will be more helpful if you ask the people to love and use the natural medicine instead of running one country to other county, one hospital to other hospital help, the people by asking for donation of eye, bone, blood etc. so don’t ask for donation but ask the to go green and natural by doing Yoga and nature medicine.
THIS IS NOT A MEDICAL ADVICE –
My heart goes out to your friend and her family. Sending prayers and possitive vibes her way.
There is nothing new about use of Vitamin C as an alternative cancer treatment and you will find more naysayers than believers on the subject. However, there has been a renewed interest in intravenous (IV) vitamin C as opposed to vitamin C taken orally, based on some success stories making the rounds. It is believed that high doses of Ascorbic acid (Vit C) supplements the immune system in fighting the malignancy and likely creates an environment which is toxic for cancerous cells while having no effect on normal ones. The key is that it has to be intravenously administered in high dosage. I personally know two final-stage patients who have tried this as a last resort after very reputable hospitals had given them weeks to a few months and advised they be moved to a hospice. A year later the same doctors are in shock as not only there was complete remission but they can’t find any traces of cancer. It has also been seen that earlier this therapy Also know some folks who have had success with the Gerson Therapy (http://www.gerson.org/).
Being a fan of natural nutrition based therapies, ayurveda, hikmat, and other traditional asian treatments, I long for the time when these alternatives are offered in mainstream health centers alongside the usual allopathic options. Typical allopathic treatments usually attacks the symptoms, which may lead to repeat business but rarely addresses the root cause. There are places in the world where you pay your family doctor a small fee year round for keeping you healthy. When you get sick, the doctor stops charging you as he or she feels they have failed at their job. The whole idea is based on prevention rather than reaction. A normal body with a normal immune system can never get sick, period.
Some links
Rationale http://orthomolecular.org/library/ivccancerpt.shtml
Three Case Studies http://www.cmaj.ca/cgi/reprint/174/7/937?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=vitamin+C+cancer&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
Vitamin C Foundation http://www.vitamincfoundation.org/vitcancer.shtml
Other Articles http://www.washingtonpost.com/wp-dyn/content/article/2008/08/05/AR2008080501297.html http://clinicaltrials.gov/ct2/show/NCT00441207
The Other Side http://www.mayoclinic.com/health/alternative-cancer-treatment/AN01572
i want some space in god’S HEART. SO I WANT DONNET BONE MARROW .PLEASE CONTECT ME.
i can help u 4 bonemarrow?????????????????????????
may i help u????????????????????
may i help u????????