Sunday, August 16, 2009

Stem cells for deafness begins human trials? Great news!

Check this website!

Center Announces Hearing Loss Study

CBR is collaborating with three leading medical institutions to initiate a clinical study within the next few months that will evaluate the use of a child's own newborn stem cells to treat hearing loss caused by an accident or severe illness.

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My friend says clinical trials are being planned or may already be underway to treat hearing loss and other conditions in children using their own cord blood. Adult trials could occur next year, according to him. He already applied to be on the list and wants to be a pioneer for the first adult human deaf clinical trials. I give it 3-5 years. The wait is not so long, certainly not "decades" like some experts say to appease the Deaf who would oppose everything that treats hearing loss.

Stem cells is already being used for dozens of different diseases/conditions of which hearing loss is one of them. He wanted a cochlear implant but after learning that a hearing loss treatment is around the corner, he canceled the CI appointment and is going to wait for the real thing. He says if he isn't accepted to a clinical trial, he will just travel and get it done in another country. He's sick and tired of being deaf and not hearing good enough with HAs.

Hes currently emailing doctors and scientists for additional information and when they will perform their own trials. Adult trials will either use cord blood stem cells(making sure it's a good match) or your own adult stem cells which can be harvested from your skin/blood. Countries like China have been treating deafness/hearing loss for over a year now. The improvement is supposed to be on the order of 20-30db today but this will increase as stem cell technology matures. Ultimately normal hearing of 25db or better will be attained.

He told me that cochlear implants will be obsolete shortly after we hear news all over of success with hearing loss stem cells. He says those who got CI recently will be furious/irate that they didn't wait just a little longer. He also says that a CI damages/destroys all your residual hearing and other parts of the cochlea making your chances of ever being able to benefit from stem cells in the implanted ear poor. He's recommending anyone with residual hearing to save their ears and have a little patience for stem cells.

We also talked about it becomming mandatory for all deaf/hoh babies to get their hearing loss treated once stem cell technology is mature, could be 20 years from now. Just about all hearing parents will be more than happy to have their baby be hearing. Some deaf parents may oppose this which is selfish and unfair when such a safe, easy treatment is available.

There are so many advantages to stem cells over cochlear implants that it's worth the 3-5 year wait. He says itll be just a year. The cost will be perhaps $15,000 for both ears, the risks will be much less and the rewards much greater. He also believes that while todays stem cell technology can partially restore your hearing, in the near future youll be able to fully restore your hearing. I say this remains to be seen, it's a question of when, not if. But he knows about realistic expectations and we would be very happy to achieve a 20db improvement initally and later on achieve further improvements as stem cell technology matures.

Imagine that today is the year 2012 and that stem cells is being done on humans with great results. A such example would be something as shown below(see audiograms) from what we know so far. We know very little and still don't have a real answer on the date and such but im hearing from a growing number of people and the number of anecdotes is rapidly increasing. At this point, it is almost certain that before 2020 we will see large numbers of people getting stem cells. The wait is on the order of a few years, not decades! My parents are very excited for me and my dad will help me afford stem cells, including making the trip to another country if I can't get into a clinical trial in America.




This person wishes to hear better. Even with max gains(Deafdude: Max gains improved my speech by 20%!) on his HAs, his hearing still isn't that great. His unaided audiogram is very similar to mine and is typical for profound losses. Aided he hears great in the lows(Deafdude:  That's one reason I skipped CI) but it takes a nosedive above 500Hz in both quantity and quality. His mid frequency hearing, like mine is very poor and his highs are nonexistant. He is glad he saved both ears for stem cells instead of destroying/wasting it with CI.(Deafdude: I am not against CI if you already have no residual hearing to risk)  His old audiologist had recommended he wait a few years for stem cells and that a CI would probably disqualify you from being able to get stem cells for many reasons. The audiologist also pointed out that CI will soon be obsolete and no longer manufactored nor supported. 



He got the stem cell treatment and begin to improve. He is so glad he resisted the temptation for CI and saved his residual hearing in both ears. Some of his friends got CI and are happy with CI(Deafdude: I give CI the credit it deserves for those with no residual hearing) but won't be able to benefit from stem cells in the implanted ear.(Deafdude: More and more of my friends are skipping CI for stem cells) When all the hair cells have settled down in their new home in his cochlea, he noticed a very drastic improvement(Deafdude: A realistic improvement is 20db) in both unaided and aided hearing with the same HAs he had prior to the treatment. His HAs were reprogrammed with less than max gains in the lows as not to overamplify.(Deafdude: HAs can't give better than baseline of 0db HL)  He hears better than CI at 1000Hz and below. His speech score is almost as good as those with CI!  He can still attain further improvement so he will return when stem cell technology matures.



True to his word, he returned about three years later and achieved another huge improvement even though there's diminishing returns in the lows. He knows that stem cells can't give him normal unaided hearing. Even chickens/birds with their amazing natural ability to regrow hair cells still end up with a mild hearing loss! Given the fact he finds high frequencies annoying(Deafdude: My hearing friends and family cover their ears) and that very little sounds/speech takes place above 2000Hz(Deafdude: As I learned from my dad and others) and also the fact he hears way better than the now obsolete cochlear implant technology, he is leaving well enough alone on his doctor's advice. Getting more hair cells would not achieve much, if anything and risk hearing worse in the lows due to overcrowding. Too many hair cells living in your cochlea is as bad as too few!

38 comments:

  1. great article!!!

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  2. Posted by: Phi4Sius
    This is a great article. Pretty realistic comparison when it comes to improving stem cell treatments. Although, I think that with the rate things are progressing, by 2012 we'll see complete restoration of hearing with stem cells, if not sooner. I think the estimates on technology and its speed at being improved on are fairly conservative. I think 2012 will be a huge benchmark to compare stem cells where they are then to where they are today.

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  3. Great news!
    At least someone in the West is in the competition with the East on using stem cell on humans. I am a bit sort of disappointed with the overly-maternalistic FDA and the like agencies in taking years to approve any procedure on treating hearing loss when they will absolve themselves if anything approved by them still goes wrong

    Let's just let providence / fate decides....

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  4. Phi4Sius, I will just be happy if by 2012 I can be in a stem cell clinical trial or travel to another country to get it done on one or both of my ears. I would love to have normal or near normal hearing but ill gladly take a 20db improvement for now if that's all I get. I can always get more stem cells a couple years afterwards for additional improvements.

    It's always good to be conservative and realistic. My hearing is pretty bad and honestly any decent amount of improvement will go a very long way. I am going to be realistic and my doctor will probably say the same. If I improve 100%, great! If I improve 75%, still great! We will only learn more and more about what stem cells CAN do in the next few months and years from now! :)

    wongtanlim3, it is indeed great news! More great news will be comming as I learn more about wonderful stem cells! It's possible ill get stem cells done outside America as they are behind no thanks to Bush and even the FDA. I would love to hear better soon!

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  5. hi

    On chicken/bird only able to partially restored their hearing, I read somewhere that they are still able to sing the exact pitch.

    Also if man can tweak nature (in the sense that restore hearing to let man hear again after he is deaf, whcih he cannot do now), man might as well tweak all the way and restore hearing 100% !

    Also I read your friend has tried stem cell treatment.

    Can let me know where because I will like to try too! Can e-mail me a contact address, website or phone no. to wongtanlim3@yahoo.com

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  6. hi dude

    Sorry that I misread the article. It is the scene in 2012 but I will wait.

    Just to share with you a link I found with old and new news article on hearing loss. See

    http://topics.latimes.com/health/conditions/hearing-loss/2009-08

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  7. hi dude

    I happen to study the bar chart on the archives hearing loss and you know what, I discover a very promising thing which I will like to share with you and your readers :

    before 2008, there is hardly any news on hearing and hearing-related news since 2005 (the year LA Times captured the data) , 2006 and 2007.

    But guess what happened in 2008 and 2009 ? Every month there is news ! his can only mean research and good news is coming , hard and fast !!!

    So let's encourage each other to be patient.

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  8. I read from the LA Times Aug news that on Wednesday, August 26th, the American Hearing Research Foundation together with Northwestern University will present a lecture on hearing, hearing loss and hearing loss therapies entitled "What You Always Wanted to Know About Hearing: Ask a Doctor."

    If you are interested to know more, you can visit the website below.

    Hopefully some of your friend or reader can attend and share with us what are the talks are about.

    See :

    http://www.medicalnewstoday.com/articles/160649.php (external link, opens new browser window)

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  9. hi duke

    a friend send me this in spanish and english. Sure looks promising and they even provide contact to call them ! See:

    http://www.cordonvital.com/ProfesionalesSalud/CB_Research/Reparacion_coclear_oido_interno.html

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  10. My friend got this email regarding stem cells for deafness:

    At this time we are only seeking children under the age of 18 months who have their own cord blood stored to help initiate the study you read about. We are hopeful that if we are successful with implementing this trial for children that it will lead to similar therapies for adults, but at this time I am not aware of any trials using stem cell treatments for adults with hearing loss. A good reference for the future is www.clinicaltrials.gov, which is a searchable database of clinical trials that are registered with the US National Institutes of Health.

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  11. Hello deafdude,
    I read in another forum, Alldeaf.com, an ECP that cree is not possible the treatment with stem cells may even last several decades. Give reasons, he worked or had experience with stem cell laboratories. What do you think?

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  12. hello all

    I think we need to be patient. i am also aware they are targettint 18 months old babies but it is the principles they are learning : if the babies' own stem cell can cure them, then the babies's stem cells can be used on you and me but most likely we need to take medication to suppress our immune system to avoid attack on the new stem cell.

    Alternatively, if the knowledge that stem cell really works, the scientists can take our bone marrow and harvest it and then inject into our ears.

    The problem is that they have too many rules (eg FDA) rules to follow. In China perhaps, they go all the way but of course there is risk

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  13. Just to share, I don't mind to inject my own stem cells into my ears but I need to meet a brave ENT to do that for me

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  14. Who says anything about immunosuppressants? Read up on adult stem cells which come from your own skin, blood, bone marrow, etc and your own stem cells are used on you. No risk of rejection!

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  15. “Regenerative therapies using cord blood stem cells are currently being researched for conditions
    including traumatic brain injury, cerebral palsy, stroke, type 1 diabetes, heart defects and hearing loss,”
    said Heather Brown, vice president of scientific and medical affairs for CBR, the global leader in the
    collection and preservation of newborn stem cells from umbilical cord blood. “Research indicates
    these cells have demonstrated the ability to go to damaged sites in the body and help induce healing.
    And the re-infusion of one’s own stem cells back into the body carries no risk of tumor formation or
    immune response.”

    source: http://www.cordblood.com/pdf/20090701_Cord_Blood_Awareness_PR_FINAL.pdf

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  16. hi all

    Really thanks for the update.

    I am very interested in stem cell or whatever therapy for my sensineural hearing loss.

    Do let me know if there is anything.

    My e-mail is wongtanlim3@yahoo.com

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  17. Hola , me llamo Cesc soy de Barcelona ( España ) . Segun el ivestigador Marcelo Rivolta la terapia de celulas madre adultas esta funcionando bien en ratones , aunque se tardara unos 8 o 10 años en ser usado en personas .

    El investigador John Brigande tambien ha conseguido encontrar los genes que impiden auto regenerarse las celulas dañadas .

    Desconocia la posibilidad de que ya se utilizara este terapia con personas , a mi no me consta , no he leido ninguna noticia que lo confirme .

    Dejo mi mail ya que me interesa mucho este tema .

    un saludo .
    Cesc

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  18. cesc

    petimpelnom@gmail.com

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  19. Wow this is great news. My 4 year old son has severe hearing loss in one ear and moderate in another. I was praying something like this would come along. Keep us updated. We are crossing our fingers.

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  20. Wow this is so great! I'm praying this will happen real soon. I was born in 1981 and no one knows if I was born deaf or not. I have severe to profound hearing loss in both ears. They're nerve damaged. I rely on my HAs and they don't help much. My husband is a musician and I'm craving to hear his work. I'm very very excited about the stem cell. Please keep us informed! :)

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  21. Este es un caso de una persona que se implanto celulas madre y recupero mucha audición.

    http://translate.google.com/translate?hl=ca&sl=en&tl=ca&u=http%3A%2F%2Fwww.repairstemcells.org%2FNewsletters%2FNL111909.htm

    Cesc

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  22. This comment has been removed by the author.

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  23. Gracias Miguel,¿ por cierto de donde eres ?

    Cesc

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  24. This is really a good news. I have cousin who needs stem cell therapy and we continously flock the net to know what is latest so that we can guide him. I have also come across few remarkable companies that provide the support systems for such procedures.

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  25. Great! Looking for more advancements in the field.

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  26. What about RNL Bio? They do stem cell cures? Is it true?

    Bernat

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  27. It is a great news!

    Please inform me about possible inner ear stem cells therapy.

    Vasil

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  28. I like this post guys, I would like read more information about cells!

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  29. I talk about stem cells in my other posts and have several posts on stem cells. I am not getting CI but saving my ears for stem cells in a year or two.

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  30. Estoy muy contento sobre los avances de la ciencia médica.
    Confío en que en unos pocos años tendremos la solución para la regeneración de las cilias del oído interno y me emociona muchísimo, comprendo perfectamente lo que se sufre dejar de oír, auque yo no lo experimenté, puede suceder en un futuro por cualquier causa así que es importante tener la solución sobre todo en la parte neurosensitiva.

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  31. Wow! I can't believe it's really happening. I began to go deaf in my early 20s and I'm now 53. I've been dreaming of a cure for nerve ending damage and it's finally coming true. Every day my hearing gets worse. Being deaf is lonely. Does anyone know how to get on the trial programmes??? Please let me know.

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  32. If you have $30,000+ you can get stem cells today by traveling outside America. Check my other posts for more info.

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  33. $30K+ you are joking right? If USA/UK are not doing human trials yet I'm certainly not going elsewhere or paying that rediculous price!!

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  34. If you want to wait till 2020 and spend $100,000 for stem cells in the USA, your choice. Ill be happy to spend $30k and get stem cells soon. The time to hear is now(soon), not in 10 years!

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  35. I wonder what the improvements are in this one. This can really be helpful.

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  37. Hola, soy sorda postlocutiva. Perdí la audición casi completamente hace 3 años. A mí me han presionado muchísimo desde familiares hasta los propios médicos para el I.C. Me llaman cabezota porque no quiero algo tan invasivo y me pronostican que la terapia genética no estará operativa hasta dentro de una generación o más.
    Navegué mucho y me informé. Yo he preferido esperar y a día de hoy, viendo los avances, no me arrepiento en absoluto.
    Es muy triste vivir absolutamente aislado pero peor sería que no haya nada que regenerar en un futuro porque el implante coclear hay sustituido a todo el tejido susceptible de ser regenerado. Un abrazo y muchas gracias por tu información

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