Showing posts with label HLA. Show all posts
Showing posts with label HLA. Show all posts

Monday, May 13, 2013

We've Got Some Great Cheeks in Gwinnett County!

252 and Counting!

That's how many living angels came to Peachtree Ridge High School last Friday and joined the National Bone Marrow Donor Registry.

Libbi, Dave, Marina, Robert at the close of the drive
Our dear friends and neighbors, Libbi and David Wengryn, asked our kids' high school officials if we could hold a Bone Marrow Donor Registry drive on the campus. 

May is a hectic month for high schools ~ AP exams, Final exams, Seniors Graduation, the spring musical, athletic competitions, and thousands of details of which I'm pleasantly ignorant.

And yet, Dr. Kevin Tashlein (our Principal) and the entire administration and faculty gave us a resounding, "Yes! Let's Do It!"  Mr. Jon Weyher (the AP for Athletics, Health/PE, Cafeteria, & Clinic) ensured we had use of a gym and opportunities to promote the event to students the week of the drive.  

We worked with DKMS Delete Blood Cancer and our local donor recruiter, Kimberly, trained our incredible volunteers and made sure the event went smoothly. 

Two Peeds Join the Registry

Alex & pals photo-bomb Robert's swab shot.
My husband, Robert, joined the registry.  "I would have done this years ago if I knew then what I know now," he said between swabs.


Our daughter, Katrina, is 18 years old and she also joined the registry. She will graduate from high school in 2 weeks. 
"I hope I get the call some day so I can save someone's life," Katrina told me as she showed me her donor registry card. 

Katrina studied the educational videos on bone marrow/ blood stem cell transplantation and worked hard to educate her peers on the importance and ease of joining the registry. She used Facebook to create an 'event' and invited hundreds of people. 
Some of her teachers had her speak to their classes about the Bone Marrow Donor Registry and what's involved for donors. 
The most common question kids asked her about donating is, "Does it hurt?" 
When she describes the two methods of transplant and types of discomfort for each, she adds, "It's nothing compared to the pain my mom has lived for years." 

DNA from Around the World Urgently Needed

Because ethnicity and heritage influence our HLA composition, race/ethnicity matters when it comes to finding a life saving donor match. 

It really is a numbers game. The more people who join the registry, the higher likelihood a leukemia patient will find a donor and survive. 

I found varying statistics on websites that stated likelihood of finding a match based on race and ethnicity. Rather than claiming specific percentages here, it is clear that Caucasian (white) leukemia and lymphoma patients have SIGNIFICANTLY higher likelihood of finding a match from the donor registry than non-white patients. 

People of African, Asian (including South Asian), Native Hawaiian or other Pacific Islander, Hispanic/Latino, Native American, and Alaska Native descent have far less chance of finding a matching donor.  

Why is there a large difference?
One reason is because there are more HLA combinations in the genetic composition of descendants from continents other than Europe. Another reason is because there are far fewer people of color in the donor registry.   

I've learned that there are several reasons why people don't join the registry. Most people lack awareness of the need. Many don't trust how 'the system' will treat and use their DNA. Recent research is illuminating. 

Let's Be the Change

I figured our kids' school was a a great place to launch our education & donor registry efforts. Our student body is quite multi-cultural ~ check out my kids' Junior-Senior Prom group.


These healthy, bright 17 and 18 year olds are inspiring. Their world views are more expansive than their parents' and grand parents' generations. They restore my optimism in humanity's future (particularly in light of how we 'grown-ups' continue to poison and neglect our ecosystem). 


I was overwhelmed by the outpouring of concern and well-wishes during the drive. 

Members of the Senior class, faculty, and administration dropped in to swab and join the registry. Some students who are not yet 18 helped to recruit those of age to come in and register.  

Coach Hellman, the Varsity Boys Tennis Coach swabs in

Gotta love these healthy, athletic stem cells! Thanks, guys!













Friends, neighbors, parents of my friends' kids, and people I worked with in various community endeavors also came to the school to get swabbed. 

Some who are over the age of 55 dropped in to let me know they would donate if they could (none pictured here, unfortunately).




My friend Kimberly Cho encouraged many people from her church to come and join the registry.










Here are a few more photos from the day.

I am grateful to the friends who came out to run the drive.
Sareena, Joella, and Lindsay are
Great Volunteers & Potential Donors
More healthy stem cells!

Thank you for signing our board after joining the registry!








    

Dr. Tashlein joins the registry!
Ana, Aliya, & Lindsey registered &
helped during the drive.


I have amazingly caring & supportive friends ~
here with Sara, Madison, & Eva Orazi with Libbi Wengryn.
I just LOVE all my kids. Here with Harrison,
Christina, Kevin, and Alexander.

Alexander & Katrina are all smiles at the
end of a successful donor registry drive.

Mr. Feldman, Director of the Theatre Department
presents $425 to Delete Blood Cancer
through donations raised by patrons after each show
of Legally Blonde, the Musical.
Kimberly Duncan of DKMS Delete Blood Cancer and I are
all smiles after a successful drive.



Thursday, April 04, 2013

When a Match = Life

I see lots of ads for matching companies -- match.com, e-harmony, christian singles... 
They sell the dream of happiness for life by promising to find your compatible, perfect match.

Here is a way to help someone (like me) find a perfect match that saves life -- and there are no monthly membership fees:   Bone Marrow/Stem Cell Donation 

First Fact:
A bone marrow or stem cell donor is determined by HLA (Human Leucocyte Antigens), NOT blood type.

Why match the HLA?
HLAs are protein markers which sit on all our cells. The immune system recognizes them and therefore does not attack them as foreign or infection. 

When the donor and recipient have matching HLAs, the likelihood of stem cell rejection or the new stem cells attacking the host body (Graft vs. Host Disease) is decreased. 

The ultimate match is when the patient and donor share 10 out of 10 HLAs. Most transplant centers require a 10 out of 10 or 9 out of 10 match for a standard transplant.

"Haploid match" is when the patient and donor have half of the HLAs in common. Biological parents and children of the patient are haploid matches. 
These transplants can also be successful with special care to decrease risk of Graft Vs. Host Disease (GVHD).

Get more info here:  HLA Match education


HLA Match Priorities
The priorities for my HLA match are as follows:
1.  Full-match sibling  
2.  Full-match Unrelated Donor (10 out of 10)
3.  Partially-matched family member 
4.  Cord blood

All four of my siblings did the cheek swab test through bonemarrowtest.com, as I did.
It cost $175 each, yet we got the info quicker than waiting for the doctor referrals and insurance approvals.

There is a 25% chance that a biological sibling is a perfect match. With 4 siblings, we figured that we had a good chance. One brother and one sister are haploid (half) matches with me and full matches to each other; the other two are identical matches to each other.

The doctor said that my son, Alexander, would be a haploid-match with me, and his stem cells would be preferred to my siblings because of Alex's youth. 

They also prefer younger male donor to younger female donor, so Katrina is excluded if Alex is willing to help his mom. In light of his upcoming car repair bill, I think he can be persuaded (wink, wink... both kids asked if they could be donors when this first came up).

We are now in the process to search for a 10/10 Matched Unrelated Donor (aka MUD) through the National Marrow Donor Program

The process takes 2-3 months, and the doctor believes that we will find a donor.

If you are between 18 and 44 years of age and interested in being a Bone Marrow/Stem Cell donor, check out these options:




They both contribute to the national and international donor databases. 

In the circle of life, I'm reminded that we receive what we put out in the world. Donation of bone marrow/stem cells, blood, plasma, and organs are the ultimate Random Acts of Kindness. Give with love and know that your gifts are received by the patients (and their families) with love and immense gratitude.

peace & love,
Marina