Saturday, June 16, 2012

Latinos in Social Media and The Bone Marrow Registry

By Carlos M. Camacho


I am proud to be Latino and have been for many years. I love who I am and where I come from. Recently I became involved with a group called Latinos in Social Media. LATISM as it is known is:
a commitment to integral action for and by Latinos. We believe in community action and our mission is the manifestation of that commitment.

LATISM seeks to equip our members with the tools they need to transform their communities by integrating community and networking resources that enable our members to make choices, take part in actions and decisions that affect their lives, and become agents for change.
Through tweet-ups and chats to actions and conferences, LATISM is working to spread awareness, education, and more. I was greatly impressed by the work they were doing and as I became involved, I began making connections but more important than that, friends. I first learned about getting involved with LATISM through their regular tweetchats (specified times where people used the hashtag #LatISM to discuss a certain topic on a given night). During one of these tweetchats, a few of us participating began to discuss the need to spread awareness about donating bone marrow. Reina Valenzuela (@Soylamar), #LATISM's Vice-Chair of Memberships, proceeded to inquire if I would write a post for a series on marrow donations discussing: the process, rationale, and other components. I agreed and began producing articles focused towards those aims. The first two can be found here and here. The third post written by me is cross-posted here with permission:

Courtesy of Latinos in Social Media
I came to join the Marrow Registry through my work with the Latin American Student Association at the University of Buffalo. Not only had the club become a home for me during my work as an undergraduate, but it also got me involved in several causes and encouraged me to think more profoundly while also providing me with avenues in which I could express myself. As a Latino club, we were an ideal target to join the registry.

Why?

People of color are not on it "en masse", which translates to people of color not being able to find matches if a situation arises when a family member cannot donate bone marrow to a relative in need.

Courtesy of the Latin American Student Association

In that moment I thought about myself, "If I needed a marrow transplant, I would hope someone who was a potential match would donate so that I may get better!"

 I decided to join. Becoming a part of the registry was simple enough. I filled out a health history form stating that I was free of certain diseases and answering the typical health questions: age, sex, weight, height, etc. Additionally, I also had to do a mouth swab; a painless procedure.

The completion of a registration does not necessarily guarantee a call-up.  It should be mentioned that some people have been on the registry for years and were never requested to donate marrow. Others, like myself, are summoned rather quickly. It was only a few months before I was first contacted as a possible donor. I was a nervous wreck. It had suddenly gotten real. I was a bit nervous but decided that it was bigger than me: this was for someone who was in dire need of bone marrow. My marrow being healthy, I felt a responsibility to share it with someone in need. The process of donating blood was not an unfamiliar one; I donate blood to the American Red Cross (sometimes more regularly than others).

This time I wasn’t filling a bag but rather, a bunch of tubes to test for several illnesses and diseases including Hepatitis and HIV/AIDS. There was also a new test they would be doing which would see how well my DNA matched that of the patient in need. This whole process takes time. Roughly 4-6 weeks of waiting before getting the call...I was a match! I would need to get a physical to make sure I was a healthy match.

The physical was normal and the Marrow Registry covered everything. I didn’t have to give insurance information or pay a dime for bloodwork, the physical, or any of the tests run. After the physical it was discovered that I have a slight abnormality in my heart. I was then promptly sent for further testing from a cardiologist to make sure I was healthy. Apart from this initial finding, I am all set to be a donor. I must say that this process has been amazing.

The Marrow Registry contacts, the staff at New York Presbyterian where I will be donating as well as at the LabCorp (where I did my bloodwork), have been so amazing throughout this process. I am still a bit nervous about my donation but I am also very hopeful. I was scheduled to donate on my birthday, Monday April 2nd but my patient was not ready so the donation has been delayed. I continue to hope for my patient’s health and hope that after the transplant he can be cured of his disease. We all have the power to take action and I encourage you to do it.

For more information please go to the National Marrow Donor Program website.

Cross-posted from the Latinos in Social Media (LatISM) Blog

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