in my opinion when we have a stem cell treatment for DMD we will see the first emergence from the various clinics that offer stem cell treatments and advertise the same on the internet.

Found one hostipal in China which talks of treatment of DMD. They claim that DMD is treatable condition (info at http://www.beikebiotech.com/index.php?option=com_content&task=v...).

I did write a email to them asking for details on how exactly is the treatment done. Has anyone contacted them to investigate this possible cure?

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The article is dated 2004. I wonder what is hapenning to that kid now, almost 5 years later?
Also, the stem cell clinic in Ukraine still appears to exist. Their web site is http://www.emcell.com/.
They seem to be saying that their treatment needs to be repeated every 6 mnth or so.
I will e-mail to them and ask them (in Russian) what they offer. I will keep everyone posted.

Paul Johnson said:
Actually a little more poking around - the reporter won a Pulitzer prize for a series of articles back in 2004 on the subject of Stem Cells: Here is an index of the articles: http://www.pulitzer.org/works/2005,Explanatory+Reporting


Paul Johnson said:
I have e-mailed the Emcell clinic in Ukraine. They have responded with astonishing speed. Here is what they said about their treatment for MD.

Strong positive effects of stem cell treatment are manifested during 3-4
months after it. It is necessary to take into consideration that children
are constantly growing and gaining weight. For the formation of new
tissues, children need dystrophin deficient in the body of DMD patient.
Administered embryonic stem cells and their descendants substitute for this
deficit, but the balance achieved is maintained for 3-4-6 months. After
this, the condition of the patient worsens, which is the sign for the next
course of treatment. Children usually visit our Clinic 1-2 times a year,
depending on their condition, and stay for 3-4 days, during which they are
administered 3-5 ml of suspensions containing different types of embryonic
stem cells.

They also requested more info from me regarding my sons condition.
I will keep you informed or our communication.
Although, I am not extremely hopeful as I have seen a rather negative review of EmCells on the internet.
Please let us know what you find out. Does anyone know if Dr. Wong has heard of this? I know that stem cell treatment has helped those with MS???????
My parents have been in contact with the lab who has been very responsive. They are gathering a team of doctors to meet with them and will be addressing their questions and concerns. I am not planning on spending all of my money on this treatment however I am looking into the possibility that there may be something to this. And if I do not look into this now later on in life I don not want to look back on this and think what if I had done something different. Could be we use them could be we don't. But I will now to my satisfaction that I looked into this.

But yes the findings that I receive I will definatley post. I have emailed a list of questions to my parents to ask. They will also call if they need other questions answered. I have also told them to take pictures of the facility and to get background information on the facility.

Back in the US we have a group of scientists that we know working on getting any information that we can obtain about this facility.

I am not going into this with a blindfold. But what if . . . they really have something?
You might also want to find out how they are screening the donated cells for HIV in the event that they are not coming from the patient. Please be very careful.

BOZ4J said:
Can you ask in that clinic before you spent your all money how they plan to overcome immune system in case using donor cells or in case of using patients own cells how they paln to fix those cells before using them as those would have same genetic material as your son's muscle cells.( same error in the dystropin gene too)
I have had a private chat to Pat Furlong. And this is what she had to say.

Unfortunately, stem cell treatments are not useful in DMD. There are major barriers to overcome before this approach might be effective. The barriers include:
1. type of stem cell. Cossu (italy) is using mesangioblasts and is expected to peform a single muscle or limb delivery clinical trial. This is not simple as the boy(s) will need to be on an immune suppression protocol for the rest of their lives.
2.Programming the cell to make muscle. The muscle environment in DMD is not simple. While there is turnover of muscle cells, the environment also includes degenerative fibers, fat and connective tissue. If the muscle cells are not programmed to make muscle, there is the chance they could make matters worse by increasing fiber and fat in the muscle.
3. Delivery. Theoretically it sounds simple - give the cells IV and they go to muscle, but it just isn,'t the case. Given IV, the cells are likely to be destroyed in the liver and it is unlikely sufficient will get to all the major muscles and in sufficient quantity to rescue the muscle fibers.

it is so sad when companies prey on vulnerable families.

Apparently, Pat is familiar with EmCell and a few families who traveled to Russia (and China), received the
procedure and then nothing other than financial ruin.

It would be nice to hear from these families, but they might feel reluctant to share the negative experience.
I suggest we wait for the real treatment.
Some news about Beike, the only medical campany I find making any claims towards treating DMD with stem cell.

Beike opened a very large facility in China (details in the link below). At least they have enough money to make very large builds...no more a back room operation...:-)

In India also Beike launched a big event for a upcoming facility. Unfortunately their India contact is not able to given me convincing answers on how their stem cells treat DMD



http://www.beikebiotech.com/index.php?option=com_content&view=a...
My parents traveled to India and met with the group of doctors that actually perform the procedure. However the facility does not claim they have a stem cell cure their claim is that they can slow down the progression of duchenne. How it works: Once you are in China the treatment takes 25 days. You or your child are not allowed to leave the Chinese hospital during that time due to the fact that you may compromise the treatment by being exposed to outside germs and viruses. The child's immune system is already compromised making the risk of infections high. Stem cells are taken from 5 umbilical cords and tested excessively for about a week for various risks and diseases. However the stem cells need to be implanted within 1 week of the umbilical cord being delivered. Umbilical cords come from strangers. Then the stem cells are delivered to the patient through an IV or through injections.

India is going to be building a facility larger than the one in China. Plans are already in motion for this. However the group of doctors in India claim they are about a year away from a cure. Time will tell.

I am not convinced on this treatment until there is something published. I do not want my son to be part of a treatment that may disqualify him from future trials and treatments.
Kulwant,
Making a statement like "Then the stem cells are delivered to the patient through an IV or through injections" looke like telling someone that there are cures or remedies in Alopathic medicine. Beike is not giving any information on what stem cells they are taking of and how they say that their treatment can even slow progression. On the other hand the claim is very consistent and confident.

I will definitely not propose a dosage or a trial participation, but these guys defenitely need to be closely monitored.
The first thing that they told us at the meeting was that "this is not a cure." By stating that "the stem cells are delivered to the patient through an IV or through injections" is not implying that they have a cure. I am just providing you with the information that I have received. I am sure that Beike is on to something however time will tell.

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