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#6355 - 11/26/06 10:33 PM Re: Ichthyosis advances
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
I have close family that recently banked cord as well but they were told that it had a limited useful life. I think it was 10 years (??). I remember thinking then that it would be of little tangible benefit as any real use of the banked cord blood would likely not happen in the short term.

I am certainly far from being an expert, but I was under the impression that stem cells from cord blood and bone marrow were different from embryonic stem cells for the purposes of comprehensive gene therapy research. The latter are of far greater benefit and adaptability to gene therapy. I could well be wrong though and there's a darn good chance of that when I start up on a topic like this [img]http://www.ichthyosis.com/ubb/wink.gif[/img] (I didn't even know, or pay attention to, the fact that inactivated viruses are used as a delivery mechanism. So I broaden my understanding each and every time something on the topic of gene therapy comes up).

BTW Babelfish is a very good general purpose translator (I use the yahoo version). As Jason mentioned it is almost always a "rough" translation of a text and you really need a basic understanding of the language if you want to tweak the translation. You have to be careful when using it for 'single word' or 'short phrase' translations because it will sometimes give English words that are totally outside the intended context. Sometimes so off-the-mark that it's quite funny.

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#6356 - 11/26/06 11:08 PM Re: Ichthyosis advances
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
I was not aware that cord blood has a limited life. I will have to call for more info...that would be good info to have. I am not yet far enough out from the cancer to be considered in the clear, so it made sense for me- Also, Viacord banks for free if you have a history of one of the diseases currently being treated with cord blood. Hodgkins is one.

I don't know what the difference is between the two types of stem cells either...interesting...I will try to find out more about it. I simply recall that cord blood could be donated to Viacord for research-

Google here I come!! Thanks Gryphon!

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#6357 - 11/27/06 12:37 AM Re: Ichthyosis advances
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
Wow I didn't know some services banked cord blood free based on medical history. I checked whether that also applied in Canada and just realized that some hospitals in Quebec participating in a provincial program will bank cord blood, on demand, for no charge. Darn! My family members payed about $800 earlier this year to do it privately.

I'm not at all discouraging the practice of banking cord blood, and it's a great assurance if a need arises. It's just that, in my mind, the "fine print" about the limited life of the cord blood stood out above all the marketing in the brochures about the benefits of banking the blood.

Just to check my facts on cord blood life, I did a quick google search and came upon the info below at the National Marrow Donor Program website. 10 years appears to be the working understanding now. But only time will tell whether cord blood banked over several decades can be used, so the proper wording I guess is "at least" ten years.

****************
How long can cord blood be stored before it expires?

"Studies have shown good cord blood cell recovery after up to ten years of storage (Clin Exp Immunol 1997; 107, Suppl 1). Studies are ongoing to determine the storage life of cord blood units."

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#6358 - 11/27/06 03:43 AM Re: Ichthyosis advances
sideshowbob Offline
Member

Registered: 10/23/05
Posts: 209
Loc: Midwest, USA
Gryphon,
There are some people in the US who even oppose In Vitro Fertilization (IVF) because some of the fertilized eggs may never be transferred to the uterus, resulting in what those people see as an abortion. This really isn't the place to debate it, but I thought I'd answer your question...
_________________________
4 year old daughter with CIE

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#6359 - 11/27/06 03:20 PM Re: Ichthyosis advances
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
Gryphon...I looked into the difference between the two types of stem cells. According to my A&P teacher, the difference is that cord blood stem cells have differentiated (decided what type of cell they will eventually become), whereas embryonic stem cells have not. She thinks that this is why embryonic are more useful in stem cell research because they can be applied anywhere. Hope that makes sense... Good info to know- Thanks for checking on that time frame too- wish they would have told me!

Erin- As far as I know, they only bank for free if the condition is currently being treated with cord blood technology...Viacord said there were 40...I will look around for the list-

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#6360 - 11/27/06 05:48 PM Re: Ichthyosis advances
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
Sideshowbob: Thanks, I overlooked that whole issue. Valid point. I should retract my earlier statement that fertility clinics are outside the debate.

But I still see this whole US debate on stem cells as a 'needless debate'. Religious beliefs, of all faith backgrounds, enter political debate in my country as well. Whenever issues dealing with thwarting the will of God (ie. contraception), the point when life begins (ie. fertility clinics), or the definition of a "person" under the law (ie. abortion) arise, similar religious beliefs are discussed in Canada. We have also had religious beliefs clash with national standards as it applied to organ donation, blood transfusion, and even the primacy of a woman's life over that of an unborn child. Those issues are resolved now in Canada insofar as national policy is concerned. I have no desire to debate religious beliefs or the balancing of individual rights and I agree that this is not a place for it. However, the original post in this thread demonstrates how stem cell research is an integral part of finding a cure for ichthyosis and I am simply lamenting how research efforts if the US may not be achieving its full potential as compared to other countries. I also think there are ways to more quickly resolve the debate and avoid the state of limbo in which the US research community currently finds itself. I guess what I'm saying is that political players, on both sides, are muddying the waters and exploiting the issue for political gain when solutions that are acceptable to both sides, and for the national good, are much more easily attainable. It's a polarization issue, as so much in our world is today.

Thank God, I'm writing this on my lunch break, otherwise I would have babbled on to no end. [img]http://www.ichthyosis.com/ubb/wink.gif[/img]

I hope I haven't offended anyone as an "outsider" commenting on US politics.


Erin: Good question. In my family's situation, the decision to bank was not based on ich. I couldn't find anything quickly online either. So, I don't have an answer for you.


Dawn: Thanks, that clarifies the stem cell differences for me even more.

I asked about my family's blood bank contract this morning and it appears that it used the 10-year projected expiry to "justify" a ten-year term to the contract. Basically after ten years it will have to be renewed, with an additional fee. That is, if comes to be shown at that time that cord-blood life extends well beyond 10 years.

But we can still hope that cord blood will be found to have a much longer useful life.

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#6361 - 11/28/06 12:35 AM Re: Ichthyosis advances
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
Hi everyone. Interesting conversation. We definately need many advances in stem cell research. I banked my son's stem cell when I delivered him and I did a lot of research when I banked it at the time because of health issues that run in my family and my husband's family. The funny thing is the way the media portrays the stem cell debate is not all true. The stem cell research that has been most successful has been with adult stem cell and umbellical cord stem cells producing great results. Embryo stem cell has not been proven as successful and the media would rather ruffle everyone's feathers about what we do not completely understand by acting like stem cell research is not being allowed in the U.S. when in actuality it is being allowed and even funded by the government as long as it is not embryo stem cells. Personally I wouldn't mind the idea of donating adult stem cell or umbellical cord stem cell to research for ichthyosis and other needs. Since I did bank my son's stem cell I do wonder if his would help in the ich research issues since he now carries the gene. I never thought about that. This is really something to look into. My mind was on other hereditary health issues when I banked it and it wasn't cheap. The embryotic stem cell concern is a matter of personal choice but, I am all for umbellical cord and bone marrow stem cell research.

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#6362 - 12/01/06 09:29 PM Re: Ichthyosis advances
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
When I was looking at Babycenter.com at my 23 week profile, I noticed that they gave this little article about banking your baby's cord blood, so I thought I would post it on here since there was a discussion about banking cord blood.

When Alex was born we were going to donate his cord blood to a public bank, but we didn't get the info until too late. We are definatly going to dontate the cord blood for this baby though. Now that I know about it I can get the info on time.

"Decision Guide: Should you bank your baby's cord blood?

Cord blood banking is a procedure in which the blood left in your baby's umbilical cord and placenta after birth is collected, frozen, and stored for future medical use. Cord blood is prized because it's a rich source of stem cells the building blocks of the blood and immune system. Stem cells have the ability to differentiate into other tissues, organs, and blood vessels, and they can be used to treat a host of diseases such as leukemia and sickle cell anemia. Many parents view cord blood banking as a form of medical insurance should anyone in their family develop a disease that can be treated with stem cells. Only you can decide if banking your baby's cord blood is right for your family. Factors to consider:

Cord blood research is showing promising results.
Although cord blood is not yet widely used to treat patients, cord blood researchers believe that it in the future it has the potential to treat some cancers, diabetes, spinal cord injuries, heart failure, stroke, and neurological diseases including Alzheimer's and Parkinson's.

It's expensive.
Private cord blood banks usually charge an enrollment and collection fee of approximately $600 to $1,900, plus annual storage fees ranging from around $80 to $100.

Chances are your baby cannot be treated with his own cord blood.
If your baby develops an illness with a genetic basis and most childhood diseases are genetic his cord blood contains the genetic instructions for that disease, so it's not a suitable treatment. Most banked cord blood is currently used to treat siblings.

You probably have a better chance of finding a stem cell match in the public cord blood system than in your own family.
The chance of an exact tissue match between two siblings is only about 25 percent, according to Dennis Confer, chief medical officer for the National Marrow Donor Program, a nonprofit organization that maintains the largest public listing of umbilical cord blood units available for transplantation in the United States. In contrast, the chance of finding a cord blood match in the nation's public banks is 75 percent, he says.

Doctors aren't ready to universally recommend banking your baby's cord blood.
The American Academy of Pediatrics and the American College of Obstetricians and Gynecologists have both expressed reservations about private cord blood banking for the general public because they believe the chances a family will ever need the blood are slim and because they support a public cord blood donation system (similar to blood banks). Many doctors, however, say that families with a history of diseases such as leukemia, lymphomas, and immune deficiency, among others, should consider private cord banking because their odds of needing a stem cell transplant are higher than those of the general population.

If your child belongs to a minority group, private storage may be of more value to you.
According to July 2003 figures, a Caucasian patient has an 88 percent chance of finding a matching donor through the National Marrow Donor Program registry, while an African American's chances were significantly lower at 58 percent."
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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