bone marrow donation  peripheral stem cell donation  donor education  donor recovery  donor support forum & chat room

About The Bone Marrow Donor Support Network

My name is Marianne Guarena and I am a 33 year old, healthy, living donor waiting for that golden moment.  That phone call that changes your life, the call that connects you with a stranger who may desperately need your marrow or blood stem cells.  

First a little background.  I created a Plastic Surgery Patient Education Network to help other patients connect and share stories and information, warnings and advice, general camaraderie in an environment where plastic surgery was still hush hush.  Not the booming media presence that it is today.  It's on the TV, it's on the radio, it's in every magazine on the racks.  It's like an overdose of reality TV, with bruises and bandages.  Back when we started it was only a few websites, some medical journals and a smattering of patient advocates here and there.  Today, it is everywhere.  Now if we only had that much awareness generated for life threatening diseases which can be treated by living donors.

Our plastic surgery sites educate the public in a friendly, non-sugar coated, liberating way.  Providing a place for others like ourselves to exchange information, and help one another through the various steps of the process.  I personally feel that having a patient support network, which is run and frequented by real patients is the best resource available for the need.  Who best to share and compare the experience than with those who have been there, or are going through what you are about to endeavor?

After to moving to Las Vegas, I met someone whose dad had died of Leukemia almost a year before I met her.  She was really destroyed by it and then told me she also had leukemia and was dying as well.  Turns out she did not have leukemia at all and was using it for attention.  Anyway, before I had found out about the fallacy, it got me thinking about what I could do to help others who don't have the luxury of having elective cosmetic surgery because they are busy fighting for their lives.  So, I started researching bone marrow donation.  I learned that there were alternative treatments such as peripheral blood stem cell (PBSC) donation, and even other diseases which could be treated with my stem cells--not just leukemia.  I figured just because my (now ex) friend didn't turn out to have leukemia, didn't mean I had to stop caring about others who did.
  

Soon I found The National Marrow Donor Program (NMDP) and requested more information.  I began reading everything I could on Leukemia, its types, its treatments, its average prognoses, etc.  I was armed with info and determination.  I called the NMDP and by the time I got off the phone I had my mind set on becoming a living donor.  Since I founded our PS patient education network by creating personal journals during my recoveries, I began writing a journal for my potential donor experience.  That's how this site originally got its start.  Read more about my experience thus far.  

I started searching for a message board or patient site for donors to seek support which were similar to the ones that we run for plastic surgery.  I really couldn't find one that had the same atmosphere or same determined "Let's Get Out There and Move This Thing!" attitude like we have for plastic surgery.   I found a few patient stories here and there for which I am so grateful, one quiet message board for donors in general and one email group for which I found it impossible to join.  (I still haven't been signed up after several attempts).  But I couldn't find anything like we have for plastic surgery.  

I just wanted to find a discussion forum that was patient-friendly, busy, and contained a treasure trove of information.  I wanted a site brought to me in plain English, but at the same time not some infantile collection of information that truly did not educate me on the process.  While you will find medical lingo here, you will also find an explanation of the information itself.  You will also come to understand the black and white questions: Does it hurt?  Not that pain would stop me from donating personally, but still I'd like to know what to expect.  Sure the marrow donor program websites tell you it is uncomfortable, but I really wanted to know from the horse's mouth.  I wanted to hear it how a real donor described it in their own words, no sugar coating, in real-time and with easy access to further information if I needed it.  I wanted to know if peripheral blood stem cell apheresis is as scary as it looks.  I wanted to know what it feels like to be able to possibly meet your recipient.  I wanted to know if the growth factor they give you for mobilization for PBSC donation is dangerous and had long-term effects.  Basically, I wanted a YTF website but for bone marrow and PBSC donors to unite and support one another and join efforts to help spread awareness.  

So, I created the BMDSN, a nonprofit support network designed exclusively for bone marrow, PBSC and platelet donors--others who may be out there just like me.  Even if this site only helps one other person, it has done well by me.  Please consider becoming a living donor, you really don't know the value of your gift.  You could truly help save someone's life!

Marianne

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