Friday, February 23, 2007
Don't let fear keep you from donating
The Pasley family
By Jessica Pasley

On February 7, my family appeared on CNN to raise awareness about the critical need for minorities to register with the National Marrow Donor Program. February 7 marked the seventh anniversary of my daughter's death. She was 2.

Since 1999, my family has worked to spread the word about the critical need for minorities to join the NMDP. The message is falling on deaf ears.

Hello! Wake up! Are we killing off our own by not stepping up? Are we turning our heads, expecting someone else to do the job?

No one else can.

Because of genetics, you are most likely to match a person within your own ethnic group.

Although Jade died a few months after transplantation, she had a donor and a second chance. Her twin, Jillian, now 9, has had TWO transplants from the same donor. Jillian calls him "hero."

Try to understand the kind of hope donors provide families. Try to imagine having absolutely NO CONTROL, no ability to help your child? To know there's a possibility of saving him or her, but there aren't enough people to help? Explain that to your child.

I have lost one child, watched as my other daughter fought for her life and consoled my son, 12, as he watched his sisters suffer.

I have always believed that if Oprah Winfrey, a household name worldwide, asked minorities to become registered donors, it would happen. Her words are GOLDEN. Her level of influence is unparalleled. It would be amazing - the potential lives saved, the good deeds performed, the energy of gratitude. There would be no tool to measure such an astonishing act, no words good enough to say thank you. It would be life changing.

Get educated. Tell others. Get registered.

Is the past haunting us - fear of the medical community and Tuskegee? We are a very intelligent, determined and prideful race - we have fought for centuries to save ourselves - why stop now?

Online registration: www.marrow.org/join

Accept the challenge.

To see the Pasleys' story, tune in to a special edition of House Call with Dr. Sanjay Gupta - "Your Race, Your Risk" - Saturday and Sunday at 8:30 a.m. ET
Isn't bone marrow donation an extremely painful and complicated process? I donate blood, but a nurse friend of mine advised against plasma and marrow donation.
The pain and complications depend on what variety of donation you end up doing. There are two basic kinds. One is where they separate some of the blood-producing cells out of your blood for transplantation by removing the blood from one arm (just like donating blood), centrifuging it, and returning the rest of your blood through the other arm. They do this after you are given a medication that increases your body's production of the cells for several days, so you still have plenty of the cells for yourself afterwards. The process is similar to platelet donation, which I've done many times. There is some pain and they say there are some side effects from the medication, but overall it doesn't seem too difficult.

The other kind of donation is when they remove the marrow directly from your bones. This is done under either general or local anesthetic, using a hollow needle inserted through the lower back into the pelvic bones. You don't usually need stitches for the incisions. Your back will be sore for a few days afterwards.

I've been a member of the NMDP registry for three years, and have not been contacted to donate yet. I would be honored beyond words to make a donation and have a hand in giving a chance at life to someone who needed it. I'm terrified of needles and surgery, but I keep thinking "What if it were my child? Or my husband?" I want very much to donate if someone needs me.
Hi Matt-
I went to the site, and found that I am eligible to be a possible donor (I was surprised). You may want to mention, that if you sign up online, it'll cost you $52 to help cover the cost of the tissue typing. I don't mind paying to possibly save a life. And for what it's worth, it would probably be painful, yes, but what is a life worth?
I belong to an online support for patients suffering from a bone marrow disorder called PNH. I also have this disease.

Donating marrow requires more time committment than donating blood, true, but it's not excruciatingly painful. I know many people who have donated marrow. Some have had marrow drawn from the bones, which is done under general anesthesia. All anyone felt afterwards was some general soreness in the area the marrow was taken from. Others have had marrow taken in the form of peripheral stem cells, which circulate in the bloodstream. It's somewhat more complicated than giving blood, but is only slightly uncomfortable.

I've also had a number of friends from our group who have died waiting for a bone marrow transplant. I know their children, who are growing up without a mother or a father, and they miss them horribly. Their parent could perhaps have been saved had someone decided to donate marrow. I have talked with parents who have lost children to this disease. That's the worst pain any person can imagine. No parent should have to see their child die.

Currently we have several members who are waiting for a donor. I hope they survive until a donor is found. I would gladly suffer minor pain to give them a chance at life.

Unlike organ donation, with bone marrow donation the donor can live on, knowing they have done the best thing any person could do--save a life.
Tina and her friend should check out the "ABCs of Marrow Donation" at http://www.marrow.org/DONOR/ABCs/index.html
Marrow donors can expect to feel some soreness in their lower back for a few days or longer. Most donors are back to their usual routine in a few days. Some may take two to three weeks before they feel completely recovered.

Peripheral Blood Stem Cell donors report varying symptoms including headache, bone or muscle pain, nausea, insomnia and fatigue while receiving injections of filgrastim. These effects disappear shortly after collection. When asked about their discomfort, most donors are quick to point out that it was worth it to help save a life, and they would be willing to do it again.
Ms. Pasley,
My heart goes out to you as you mourn the 2nd anniversary of the loss of your beloved baby. It might make you a little less sad to know that on February 7, 2007, the National Marrow Donor Program conducted one of the most successful collegiate minority donor recruitment efforts in recent history. Over 1000 African American students signed up to be volunteer marrow and blood stem cell donors at Grambling University in northern Louisiana. If you were to say Tuskegee to any of these future donors, their minds go to a fellow HBCU in Alabama or to the story of the valiant Tuskegee Airmen from WWII. They did not think of that old tired excuse for not stepping forward and helping their brothers and sisters in need. I am so sorry that they were not able to find a donor for your baby, but the truth is that no matter what the race or ethnicity, they never find a donor for EVERY patient in need. But, we have to stop saying that Blacks will not donate, because they do. You do a tremendous diservice to the many Blacks that have donated. We have to stop saying it before it becomes a self fulfilling prophesy. If someone steps to us properly and treats us like the intelligent, caring human beings that we are, we will do anything that needs to be done for any one. Just like everyone else. Please have faith. It has taken us a while to get this far and we still have a long way to go but we will get there. May God Bless you and your family.
Hi Tina: Firstly, thanks a lot for donating blood. Every time you donate, you are likely saving a life. As for marrow donation, it's important to recognize that registering to be a donor is completely painless because it requires either a throat swab or a small pin prick for a drop of blood.

Also, there are two ways to donate actual bone marrow that are used today. One involves a process called apheresis which is relatively painless and simple. It's very similar in fact to donating blood other than the fact that you do need to get injections of something called neupogen for a few days prior to your donation. The neupogen causes a little bit of bone pain which you can take Tylenol for.

The other process involves extracting bone marrow (a liquid) from a few areas, but it is done under anasthetic. Neither causes any health issues for the donor, and both will save someone's life. If you're concerned about the pain, you can request the apheresis and many places will use that method. So I guess it comes down to the question of whether you are willing to endure a few days of mild pain or discomfort that can be treated with pain killers or one minor procedure with follow up pain for a few days in order to save someone's life.

There are so many people out there desperately searching for a donor, and many are dying because they can't find any matching donor. Imagine what it would be like to know you have saved someone's life, and know that it didn't cause you any problems?

I'm 34 years old and had a bone marrow transplant 2.5 years ago that saved my life. I was one of the lucky few who have a sibling match, but it is very upsetting to know that there are so many others out there who are not as lucky, and who can't find a match from others either. Please register as a bone marrow donor...

Thanks a lot
Tamir
Marrow donation can leave you achy/sore for up to two weeks afterward if it is taken from your marrow. Peripheral blood can also provide stem cells and the only "pain" is the time that you sit while a machine collects to cells. I can tell you that the recipient of marrow/stem cells goes through excrutiating pain from a regimen of chemo and radiation to prepare for a transplant. If anyone thinks that a couple of days of aches and pains is too much to give, shame on them.

My daughter had a stem cell transplant at the age of two, also. It is a horrible thing to go through. I personally have been called to donate marrow two times! I was not the best match for one patient and the other did not survive long enough to receive my marrow. I was saddened by the fact that I was unable to offer someone a second chance. I hope I will have another chance someday.

Don't register if you're not willing to give, but I hope that you never have a loved one who desparately needs marrow.
The National Marrow Donor Program says on its marrow.org site that there are three sources of blood-forming cells are marrow, blood-forming cells collected from the blood (called a PBSC donation) and umbilical cord blood. And donating does not leave lasting effects and that most donors are back to their usual routine in a few days.
I just watched the Pasley story this morning and while I understand that the tone was a "wake up call", I am one African Americans who happens to be on the bone marrow registry and have been for many years now. One Saturday morning, one of the local TV stations was doing a drive and I was out and about running my usual Saturday errands,. I often tire of of hearing all those things that African Americans don't do (donate blood, marrow, vote, etc.) and I decided to answer my own wake up call. I became a Red Cross blood donor and became a registered bone marrow donor. Both were simple and painless. So I guess you could say I had my own wake up call. I hope others are moved by teh story and listen to the call. If you don't do this, do something!!!
Dr. Gupta,

I've been wathcing on CNN with great intrest about the health problems of my people. I agree with the need for more donations...pre care...and prevention. I however think that you have it partialy correct about why the African American coumunty is upset about the prolifiration of aids and unwillingness to seek health care. There was a small reference to the experements that were perpetrated on our people. But another thing that infureates us as a people is that the preception that we are the carriers and spreaders of the HIV virus and AIDS. Becasue of the discriminating economic conditions the willfull infusion of drugs into our coumunities by our own govnment...thats why we suffer from inproportionatly. We know that this was a gay proliferation of this virus infused into our community. Yet we are now preceved to be the perpitrators of this in the media and elsewhere. Thats why the churches are angry...that point is never talked about...only that we have it more that anyone else...Explain all of the reasons...or just stop it...thats why unforutunatly we dont take this serously as a people or react with the precautions and medical care as we should. I myself and my family have been tested...so dont think that I'm just a talker...but the media needs to stop the we are the blite perceptions. My dear doctor we are the victims. If the whole story about the proliferation of AIDs is never mentioned when asking us to take more precautions via testing or safe sex..and we are seen or deemed to be the precipators of this deadly disease...then this anger and distrust on what has been set upon us will continue. (please forgive the spelling)
I have never been through the process of donating bone marrow. However I am on the registry. Please keep in mind the amount of pain that you will endure is nothing that the patient has been going through. It�s time that we stop thinking of ourselves and start thinking of others. As a minority it�s time that we raise our voices and be heard.
Save a life. Give hope give life� Don�t let another parent, sibling, or friends have to tell a love one that there is no hope, no match because someone would not register!
www.marrow.org www.bloodntissue.org (San Antonio, Texas) BE THE ONE!
I am a white 34 year old woman. i attempted to register this morning for the national bone marrow registry. It required a $52.00 credit card payment for the cheek swab to type the individual who is attempting to donate. I have 2 small children and cannot afford the monatary cost of trying to help someone. If someone wants to foot the cost I would be glad to procede. I regret I am unable.
Most in the medical community are familiar with a bone marrow biopsy. This is done to confirm cancers of the bone marrow among other things. This is typically done while a patient is awake and, yes, can be quite painful. For a donor, the process is very similar except that it is done while under anesthesia. Afterwards you can experience some discomfort, but most describe it as feeling like you have fallen on your rear on the ice and very tolerable. Usually no further symptoms after a couple weeks.

This is not the most common procedure however. Peripheral Blood Stem Cell collection (PBSC) is requested the majority of the time. With this you receive a medication for five days. The medication will make you feel a little sore and achey, similar to a good cold. The medicine stimulates your body's immune system. After the medication you have a needle placed in a vein in each arm. Blood is drawn from one arm and run through a machine which extracts stem cells. The rest of the blood returns to your other arm. Once the needles are placed, it is a virtually painless procedure.

In both cases, donors who have given their cells report that the discomfort was worth it. They state that the little discomfort they do feel will give someone else a chance at life.

Tina, I encourage you to really explore this incredible opportunity to make a difference in someone's life. Call your local donor center where they can probably give you the opportunity to speak with people who have actually donated, not the opinion's of someone who has not.

Here is a link you may find useful:

http://www.marrow.org/ABOUT/NMDP_Network/Donor_Centers/US_Donor_Centers/dc_list_by_state.pl

I encourage you and others to seriously research the donation process to see if it is right for you. Registering could impact another family more than you could ever imagine. One day you could give a family hope. You could give their loved one a second chance at life. And you will never know unless you register.
Tina and her friend should check out the ABCs of Marrow Donation at http://www.marrow.org/DONOR/ABCs/index.html

Marrow donors can expect to feel some soreness in their lower back for a few days or longer. Most donors are back to their usual routine in a few days. Some may take two to three weeks before they feel completely recovered. Peripheral Blood Stem Cell donors report varying symptoms including headache, bone or muscle pain, nausea, insomnia and fatigue while receiving injections of filgrastim. When asked about their discomfort, most donors are quick to point out that it was worth it to help save a life, and they would be willing to do it again.
Pat, Minneapolis
Another option to be encouraged to the African American community is to donate umbilical cord blood to a public cord blood donation program. Cord blood contains the same type of adult stem cells found in bone marrow and can be used to treat diseases such as leukemia, other cancers, and even disorders such as sickle cell disease. The donation of cord blood is painless and involves no risk to mom or baby. Public cord blood banks work closely with the National Marrow Donor Program to offer the best possible stem cell match for both children and adults in need of a transplant.
ABOUT THE BLOG
Get a behind-the-scenes look at the latest stories from CNN's chief medical correspondent, Dr. Sanjay Gupta, and the CNN Medical Unit producers. They'll share news and views on health and medical trends -- info that will help you take better care of yourself and the people you love.
SUBSCRIBE
CNN Comment Policy: CNN encourages you to add a comment to this discussion. You may not post any unlawful, threatening, libelous, defamatory, obscene, pornographic or other material that would violate the law. Please note that CNN makes reasonable efforts to review all comments prior to posting and CNN may edit comments for clarity or to keep out questionable or off-topic material. All comments should be relevant to the post and remain respectful of other authors and commenters. By submitting your comment, you hereby give CNN the right, but not the obligation, to post, air, edit, exhibit, telecast, cablecast, webcast, re-use, publish, reproduce, use, license, print, distribute or otherwise use your comment(s) and accompanying personal identifying information via all forms of media now known or hereafter devised, worldwide, in perpetuity. CNN Privacy Statement.
Home  |  World  |  U.S.  |  Politics  |  Crime  |  Entertainment  |  Health  |  Tech  |  Travel  |  Living  |  Money  |  Sports  |  Time.com
© 2014 Cable News Network. Turner Broadcasting System, Inc. All Rights Reserved.