When my wife and I had our first daughter a little over a year ago we decided to bank her cord blood just in case something terrible happened to her that would be fixable using those cells. The other day I received a letter from the cord blood bank stating that they have already cured over 100 children of type 1 diabetes by using the stem cells harvested from their banked cord blood. Those cells, the letter said, are 100% compatible with the person they belonged to and up 75% compatible with siblings or other family members.
I was wondering if anybody here has any experience, or knows anything about family members being cured through this method.
Good article, though a little dated. Based on the letter I received from Viacord (the blood bank we are using) things have progressed a lot from those trials in 2007. I am ecstatic to have some peace of mind as far as my daughter goes (should she ever be diagnosed with type 1), however I would like to know more about family members using cord blood for the same results.
Either way I think this is a very promising prospective cure.
By the way, the letter said that they have cured many children with cerebral palsy with the same methods, so it’s good news for more than just us diabetics.
How intriguing!
We had had experience with this. My son is 12 years old and was diagnosed as a type 1 diabetic when he was 9. We saved his stem cells at birth and 2 months after diagnosis he was infused with his own stem cells. The results have been amazing!!! We are now in our 3rd year of honeymoon phase. Now be careful. Stem cells are NOT a cure for type 1 diabetes, there is no cure as yet. However, if we can keep my son producing insulin, he will be a candidate when a cure becomes available. I can talk all day about this. I am really excited about the advancements in this field. I am not a doctor, but I am seeing first hand everyday how this has affected my son.
It is true that stem cells are 100% compatible for the person who provided them and 75% for siblings (we have younger twin daughters who are not type 1). It is very disappointing that the truth really is not exposed about this. There is a lot of confusion about stem cells and where they come from. It is a painless procedure and in my opinion a priceless insurance policy.
Again, as I said, I can talk all day about this.I am very excited about this technology, however, it is not by any means a cure and your stem cell storage provider may not be accurate in saying that they have CURED diabetes.
fascinating! Wish they had this stuff when I was a kid.
Brian, thank you for that. It’s one thing to get a company letter boasting about their own services and another to see it from real people and real results.
That is very good news for you and your son. A little disappointing to hear that it’s not an outright cure (and aggravating since the letter clearly stated “Cured”) but I’ll take what I can get.
Can you tell me more about your case (if you want)? You can talk all day about, but I can listen all day too. This is very important to me. I have nightmares about my daughters becoming Type 1 and since my second daughter is about 3 months away from being born I’d like to know what kind of an investment it would be. To be honest I’d still go ahead and do it anyway, but I know so little about it all.
For example you said your son was “infused” with his won stem cells. What exactly does that entail? Is it surgery? Shots? A long complicated/painful ordeal? Something else?
Also, you mentioned that you have twin daughters and connected it to the statistic about your sons cells being 75% compatible with them. Does this mean that the cells collected are plentiful? I was under the impression that it was a one-time deal only (basically that once you needed the cells they were used with nothing left over for siblings). This was a main reason why I called them and fought very hard to get them to agree not to have me participate in their involuntary testing crap-shoot (basically the legal notice below the signed documents that states they are allowed to use those cells for testing purposes and will compensate you $25,000 if they do so). They never mentioned that there would be enough cells left over to also “cure” my daughter if needed and I told them I’d rather have the hope of a cure for her than the money.
Anyway, you’ve got me excited now. I hope you don’t mind sharing some more with us.
http://floridaphysician.med.ufl.edu/2008/11/fall-2007/stored-cord-b…
Here is the article from Florida Physicians magazine who did an article on my son and the procedure. I think the process is pretty simple, and there are pictures of my son getting infused, It really is not that big a deal, and of course the University hospital provided the stuffed animals!!!
Stem cell collection is in fact a one time deal at birth. Incidentally, we also had our daughters stem cells collected as well, and this was prior to our son being diagnosed. Interestingly enough there is some disparity about collection techniques between Canada and the US. Even after the infusion, my son still has some stem cells remaining. when he was born, there were several vials collected in varying sizes. This of course was 12 years ago, when the collection processes were beginning to be standardized and there was some leeway in collection volumes. Such would not have been the case if it was either or both my daughters who were diagnosed. The collected quantity for my daughters may have been reduced because they were twins, I really can’t say. I know that my son has some left, and the girls still have theirs untouched.
Again, I am by no means a medical professional, however, I understand that technology is being developed to be able to duplicate the stem cells. I am not sure where that stands as of today, but there are great strides being made in the avenue.
Feel free to ask any questions you want about this. I am excited and as I have mentioned, we are living proof that this is a valid option. That being said, there are other factors that may have contributed to our success. My son was infused shortly after diagnosis (2 months to the day). My son, well truthfully my wife and I, diligently try to keep his numbers under control. I am sure that helps, but even with those contributing factors, I am proud to say that my son is in pretty good shape with his condition.
I didn’t know about this until I read your post. I’m sure you’ve seen it, but here is a link to JDRF’s official position on cord blood therapy. http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&page_id=643CEBB4-110A-9BB5-F870BEF6B544DD2A
I had not actually seen JDRF’s official position prior to your post. Thank you for offering that. I have reviewed that commentary and I have to say I am a little surprised. It is true that Dr. Haller’s study did not work for everybody and there are countless reasons for that which are likely not related to stem cell infusion. Understand that the participants all had unique circumstances. What was special in our case though was that our infusion happened very quickly relative to diagnosis (2 months to the day). We had the opportunity to discuss the study with other parents who cooperated in the study prior to our acceptance and the results frankly were not great. However, our case was unique. I think it also helped that at the time, our son was the oldest participant. I don’t know if that was a meaningful factor; I am not sure that in a study of this nature that ALL possible variables can be considered.
All I know is that my son is progressing very well and insulin demands are diminishing as time progresses, even though he is aging and growing. Is he cured? Absolutely not. But our perspective is that a cure is not as far off as may be thought. If we can keep his pancreas moderately functional, then limitless possibilities exist. I am confident that had we not taken this step of stem cell infusion, these possibilities would not be available today.
We are very optimistic on the process and the technology, and I strongly encourage parents to store the stem cell blood if possible. Mostly because you never know.
Prior to my diagnosis of type 1 a month ago, we were considering banking my daughters cord blood. She is due in 2 months. Upon discussing it with my wifes OB, we decided not to do it because we learned about the public cord blood bank. If cord blood is needed for a FDA approved therapy, you can get it from the public bank. However, if its experimental, like in a trial, you cant use the public bank. This option satisfyed us after learning that the baby’s own stem cells may have the same genetic defects the baby has, rendering them useless.
Now that I have diabetes, I’m rethinking this. Now I know that my unborn daughter, and 2yo son have an increased risk of type 1. We did not bank my son’s cord blood. Now I’m thinking, what if my daughter is fine but my son turns out to be diabetic. There is a good chance her cells could be used to help my son if and when a new therapy comes along. And I wouldn’t have to wait for FDA approval (like with the public bank) if something looked promising… There are lots of scenarios here to consider. If we can swing the cost, maybe it would be foolish not to.
Lots to think about.
Personally I think the only real consideration is the cost. All the other excuses used by some doctors and the JDRF are disputable (and downright ignorant IMO). I don’t have time to answer the other new posts now, but I want to say to you moonsynth that if you can pay for it, do it.
Like you said, if your daughter’s cells are healthy and your son needs them (assuming he’ll be compatible) that’s a very viable option. If your daughter’s cells carry the same genetic defect they can still be “genetically engineered” at the cellular level to remove the defect. This technology isn’t, of course, something used every day on patients but there are numerous studies going on where they actively changing the genetic makeup of mice at the cellular level to remove all sorts of defects. Who’s to say that in a few years it won’t be common practice to do the same for people.
Then there’s also the environmental causes of diabetes to consider. I don’t know what current research is suggesting about this, but my doctors 10 years ago concluded that I became type 1 after my body reacted to a virus. Like I said, that might have been debunked already, but if it’s true then the cells don’t carry the defect and that means the cord blood cells will be healthy and usable to treat/cure your daughter as well.
In short, there are so many variables and possibilities that I think it would be foolish not to give our children every possible chance we can. I’d hate to learn a few years down the road that I could have cured my daughter (may she never need to be cured of anything) if I had banked her cord blood, but I can’t and I didn’t because I listened to some cynical doctor who convinced me otherwise.
If the money is there I say do it.