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Molly-Tx
Reply with quote  #16 
I acknowledged that I think it is a huge gift of love.

But, if someone is going to consent to something, it needs to be an "informed consent"...that is not what happened with my daughter.  I should type in the "papers" that she signed and the "risks" that the paper showed ..... they were all misleading and not correct.

I have a friend who still has trouble to this day with her sciatic nerve from her donation.
Again, I wish anyone well who decides to do it....but, it should be with full knowledge of the pros and the cons.

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Molly-Tx
Reply with quote  #17 
PS:  It took three letters from us, four emails, four phone calls, and a letter from our lawyer to retrieve the data.

They treated us as though we were criminals because our daughter decided NOT to do this.  Once she had signed, they did not want to give her back her data or her swab.  But, it was finally returned.

I feel that this should have been returned immediately.  And, we contacted their national office and were ignored except for a standard email reply.

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Jean
Reply with quote  #18 
Just curious- which registry was it?
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Molly-Tx
Reply with quote  #19 
I don't guess I should mention names....but, the National one...
with a local office and rep out of Houston Tx.


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Jean
Reply with quote  #20 
Does your friend wish she hadn't done it because of the nerve pain she still has?  I've watched 2 people die of Cancer and I just cannot imagine someone regretting that opportunity.

Maybe the moral of the story is, your daughter learned a very important lesson- don't sign up for anything until you fully understand all risks.  In this day of court TV and CSI we should all understand that this is no lighthearted matter and that we have limitless resources for our own research before signing or swabbing.  You make your daughter sound like a victim child when in fact she was an adult who just made what she feels is now a bad decision.  Well, we all make 'em.  This one sounds like it was well intended.

Once again for anyone who is registered or is considering registry- even if you do register, and they identify you as a potential match, you always have the right to say no.  No one drags you into the hospital.  They usually do not have to.

I wish you both well and hope that no one suffers because she retracted her registry.
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Molly-Tx
Reply with quote  #21 
My daughter is not a victim child...but she is not "street wise" as her twin brother is.

They sold her in that classroom with all the pros....and now she realizes that the only disadvantage that they mentioned was "soreness".....she admits that she thought they were being "truthful"....they were not.

It many times takes years to have the maturity to realize that sometimes things are sugar coated...and this one surely was at this school.  I can guarantee you that the literature that I have in my home that they passed out in that classroom is misleading. 

And, I am writing letters to their National Office asking that they change that...they should be responsible for the truth...and the whole truth in asking people for donations.

Again, she is not a "victim" child...but she is young and not worldly.  And, yes...she learned from this lesson..she acknowledges that she will never sign another contract without talking to lots of people first.

I wanted other parents to know of this who might have daughters who are as naive as my daughter is....but she was not the only culpable party here...so was the donor representative....and when her hand was called on it, she refused to return phone calls.  When she was finally forced to, she was shocked that her home office had not given the information to her.

There are two sides to every story.  If someone wants to donate and take a chance and they come through it with flying colors, hoorah for them.  But, when someone does it without all the facts, and limps around afterwards, it is difficult to not feel used when the truth was not told.

Best wishes to you in your continued donations.

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Molly-Tx
Reply with quote  #22 
PS:  I should add...this was an English class...mandatory attendance.  The representative had their presence whether they wanted to be there or not.  And, the plea was made, for a swab...a simple swab....to help someone...with only soreness after to be the only side effects if they became a donor.

It was not a booth in a corner of the college where they had a choice to walk up to the booth or not. 



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FLORIDA GAL!
Reply with quote  #23 
I think the real issue is that of going to a college campus and soliciting donors amongst very young and inexperienced people in such a way that could make them feel pressured by their peers.
Not to mention which, wasn't your daughter paying for an English class?
Dont get me wrong - I have nothing against donors or those seeking them, I just agree that this wasn't the place to do so.
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Molly-Tx (Florida Gal)
Reply with quote  #24 
Florida Gal,
Thanks for understanding.

What was so sad is that their rep was only a few years older than my daughter...and
was truly unaware of the cons......so, we helped to inform her.  But, she did ask, "Where are you getting your information. Can I have copies."

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Olivia
Reply with quote  #25 
A very balanced discussion on both sides--I do agree with Molly and Florida Gal that Molly's daughter was in an environment where peer pressure could be used, and it was not a 'free choice' situation to hear or not hear the information. 

While I am a supporter of organ and bone marrow donation, I have to agree that better techniques could be used to solicit donations--such as having a table in the hallway of the college, etc. 

I support our military, but this example relates:   It reminds me of the same techniques used in high schools where military recruiters come into classrooms to strongly solicit teens for military service, and there is not information given that would give teens full disclosure of the risks and challenges that would await that career choice.   Same could be said of any college that did the same--though as I recall, most colleges set up tables in the gym and have a 'college day' or some such thing, giving students the choice of what college they might be interested in.   

O.

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Olivia
Reply with quote  #26 
p.s./ I also think the fact the donation center refusing to return her sample info without being forced to is low-class.  Not cool. 
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Anonymous
Reply with quote  #27 
I have donated my bone marrow when I was 13 years old. They definitely did not explain all the cons of donating bone marrow to me, e.g.. possible damage that would lead to sciatic nerve compression. I am now researching about the possible long term effects from donating bone marrow, because I have had frequent sharp pains on the back of my hip here and there over the years. I am now 25. I would have appreciated it, if I was more informed about the cons of donating. I do not regret that I donated my bone marrow, nor do I discourage or want to scare others from donating, however, I do agree that many times they "sugar coat info" and do not tell you the whole truth because of the desire/need to want to help save lives.  I am assuming I have this problem because of the surgeon, who probably did not do a clean job. I am looking to find a way to get rid of this pain once and for good. It comes and goes, and when it comes it can get a bit frustrating. 
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Julz
Reply with quote  #28 

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Equality
Reply with quote  #29 
This is a very good discussion to have and I don't think it is about the pros or cons of helping another person via organ or DNA donation. People who volunteer need to know the best case and worst case scenarios for their participation so that they can make an informed decision. Selling the dream is one thing, while hiding a potential nightmare is another. A person should be allowed to rescind his/her participation at any time. And in regard to samples there should be a grace period in which they can be returned or destroyed.









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jason
Reply with quote  #30 
The world may be a crazy place through your eyes...so I'm guessing that you don't have kids.  My children, girlfriend and the people that surround my life make this world amazing and the things that I dream about not only continue to make me believe in humanity and mankind but I look forward to bringing more children into this "crazy" world.  It's people like you that refuse to see the good and only see what they want as crazy or bad and dilute the minds of those willing to bring about a positive influence among the future.  It saddens me that you are like this but if it came down to donating to save your life I would do it because that's the type of person I am.  I would donate to a complete stranger to give them the hope to believe in man and give them an opportunity to keep dreaming.  I hope you open your eyes and see the good and if you can't then lose the internet and move to an island where you can surround yourself with your thoughts of how bad we on the "mainland" have it.  Enjoy yourself in a land full of sadness and hopelessness. 


Quote:
Originally Posted by momified
I wouldn't advise anyone to be a donor for anything. Not because I am mean, well maybe I am, but because the world is getting crazier by the minute. I know this will make me sound really old, well I am pretty old, but I am horrified sometimes by modern medicine. Oh of course there are great miracles and life-saving surgery, etc. But I am very very skeptical and I believe in staying far away from hospitals except for extreme emergencies. They make an awful lot of mistakes in hospitals, and they are full of super-germs. Yes, someone has to be a donor for bone marrow, etc., I guess, but I wouldn't let my daughter, if I had one. I also think it's dangerous to be an organ donor, because they start cutting the instant they suspect you might be dead. I saw a news story about this, where the patient started to wake up and waved to the nurse, who notified the doctor. The doctor kept brushing her off, but fortunately she got his attention eventually.
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