My friend Dennis went to the HLAA and he was kind enough to provide some answers while chatting with me. He was too tired and busy to post the answers right now but will do so in the next few days. I am posting what answers he gave me so far.
He says the 3 doctors don't know for sure on the timeframe but they say 25-50 years just to shut people up who keep nagging the docs and to please those people who secretly hope that stem cells for the deaf does not happen "soon" or even in their lives. I talked to another friend who agrees with me that culturally Deaf people fear that any treatment/cure would destroy their culture so they are hoping everyone stays deaf as long as they live.
The docs did say that testing is currently done on mice and chickens and will move on to monkeys. They said: monkeys are next within the next 5-10 years
human trials take a minimum of 7-15 years. So yea most of us will be alive when the time comes. We will learn alot more before 2020 when trials begin on monkeys. Right now enough is known that deafness can be treated someday.
It's too early to know how many DB improvement, the doctors couldn't even answer that one. However it's known that chickens which can regenerate their own hair cells still end up mildly HOH(25-40db HL) after they are deafened with ototoxic drugs. The new hair cells which were regenerated by chickens are of lesser quality and fewer in quantity than original hair cells. I personally am going to realistically expect a 20db improvement. It will take a very long time before technology can restore profoundly deaf people to normal hearing(maximum 25db HL) but a partial restoration alone is great, youll be able to benefit from HAs again or benefit much more.
There's actually 3 different methods currently being researched. One is "implantation" of stem cells, two is "turn off the stop growing triggers" the third is to try to get support cells to turn into hair cells when hair cells die off. Ill find out more on the other methods soon. It's possible one or more of those methods could be used in humans before stem cells.
I would give it at least 10 years before one or more methods to restore some hearing to the deaf is ready for human clinical trials. In the meantime, there's powerful HAs out there and for those with no residual hearing, there's CI. You can read my previous posts to learn more about HAs and CI.
*update!* HLAA links with PDF answers!
Friday, June 19, 2009
9 a.m. - Noon: Research Symposium, An Update On the Latest Hair Cell Regeneration Research
Cochlear Regeneration: A treatment for severe hearing loss in our lifetime?
George Gates, M.D.
Hair Cell Regeneration-Where Are We & How Did We Get Here?
Douglas Cotanche, Ph.D.
Can We Regenerate the Mammalian Audtory System?
Neil Segil, Ph.D.
Vestibular System Reconstruction
Hinrich Staecker, M.D., Ph.D.
This is interesting to read, are you online?
ReplyDeleteGreat interest for reporting. You still like that! I have a doubt: do not you think that there may be a cure for deafness in humans before ten years?
ReplyDeletethanks
This was interesting! Thanks for posting...
ReplyDeleteThanks a lot for sharing the information
ReplyDeleteHi,
ReplyDeleteI have a son who is 18 months old and I was devastated on hearing that he is a HOH kid.
He has a hearing loss of 70 DB in his left ear and 80 db in his right ear. He had some Ear infections at around 4 0r 5 months and then he started squealing which we were not able to understand. We discovered the problem in his 9th month and done the tests.
We are using Naida for him now. We used the siemens single channel for the first 3 months. We are taking him to an Early intervention camp for Hearing impaired children which is 2 hrs daily.
He is babbling few words like Mama, Papa, and catching up on some words in jingles.
Can you pls let me know, although it is very subjective, that my child will be able to adjust in a mainstream school or how much he can grasp in usual speech.
also, thanks for the info on stem cell therapy. There is a ray of hope for us I believe and pray to God.
I will keep blogging on any additional news I get about stem cells. Do you have his audiogram? At what frequencies is his 70db loss? I had 70-100db hearing loss since birth and did fine oral-only. I speak clearly and understand some speech so im sure he will do fine if he has as much or more residual hearing than me. He should see a cure by his teens and hear much better.
ReplyDeletehi
ReplyDeleteI am from Singapore. I really appreciate your efforts in keeping like-minded people like myself updated on the hearing loss cures. Really thanks.
I got sudden hearing loss in my left ear due to unknown reasons (possibly infection or mini-stroke in the inner ear) from Jan 2009. Really look forward to hearing in my left ear again.
On the deaf culture, perhaps the most staunch of them should give themselves the opportunity to hear first (ie get the new treatment when it is found later) and see whether they like the sounds, the music etc or their culture more. If the latter, then they can choose to take hearing-damaging medicine and go back to their own deaf world.
From : wongtanlim3 at yahoo.com (my e mail account)
Please advise how I can use wongtanlim3 instead of anonymous
ReplyDeleteFrom : wongtanlim3 at yahoo.com (my e mail account)
Comment as: click the down arrow and select your name.
ReplyDeleteMost hardcore Deaf people don't want to be cured/fixed and don't care if they never hear a sound. They aren't even interested in today's cochlear implant technology. Ive talked to them and very few ever want stem cells, even those who finally decided on getting a CI.
It's hearing people like you who suddenly lose hearing and late deafened people who will be the most interested. Also expect a high percentage of deaf babies born to hearing parents to get the treatment/cure. I am saving both of my ears for this day which should occur by 2020 or earlier.
Not exactly understand why the deaf people do not want to hear...
ReplyDeleteBack to the cure topic, I sometimes think some scientists (even the top one who keep appearing in the news / who keep giving 'breakthrough' news) are not so simple. What do I mean ? Some make the 'breakthrough' announcement to secure funding , or at the end of funding contract, to secure fresh funding. Also there is no real motivation for them to work faster to find a cure; they might imagine that if they find a cure, then all the credit (at least the financial gain) will go to their sponsor company or University and what they get ? End of their funding / pay cheque. What are your view on this ?
wongtanlim3@yahoo.com
Those who are born 100% deaf and never heard a sound wouldn't know how to make sense of sound, it's a brain issue. In my case, my brain just needs to make sense of high frequencies and from those who got CI, it works after several months of training.
ReplyDeleteSome of those with CI say they hear just fine thru a CI. What will they do when their CI stops working after 15 years and CI is obsolete? They will either need stem cells or never hear any sounds again.
The team of scientists who invents any method to improve hearing will be rich and famous. You can bet they will share in the credit, wealth and royalities.
hi
ReplyDeleteCan share how you got deafness ? I note you are not getting CI ? Can you hear any sounds?
I was born deaf. You can find my audiograms which ive posted in several posts on my blog. Yes I hear sounds and some speech with powerful HAs. Do you have any blogs and any audiograms?
ReplyDeleteI am from Singapore. I really appreciate your efforts in keeping like-minded people like myself updated on the hearing loss cures. Really thanks.
ReplyDeleteI got sudden hearing loss in my left ear due to unknown reasons (possibly infection or mini-stroke in the inner ear) from Jan 2009. Really look forward to hearing in my left ear again.
I do not have blogs ; I will like to set 1 without charge/fee but do not know how.
I have 20 auduigramms done up : they are slopping from moderate hearing loss in the low / middle freq to severe in the high fre (2k and above).
We can share findings on cure for hearing loss as and when they become known.
I have tinnitus (usually come with hearing loss). Do you have ?
I was thinking the Deaf Culture staunch advocates merely are deaf but do not have T, or else they will be rushing to find a cure.
My findings so far :
ReplyDeleteBroadly, these are the challenges :
I. finding a cure -
1. Using stem cell
Recently (Mar 2009) Dr Marcelo Rivolta and team at University of Sheffield have for the 1st time in human history managed to re-grow human ear nerve in lab. So now tests can be done directly using human tissue instead of say mice's
Problems
- the cell do not have the characteristic hairs which lead to its name 'hair cell'
(but Marcelo team say they are confident they can perfect the growth)
- body may reject if come from another person (solution : take medicine to suppress rejection)
- how to transplant them into the small 5 mm cochlea
2. Using gene (injecting turn-on gene (eg Atoh1 formerly Math) and suppressing turn-off gene (eg retinoblastoma or Rb1) by hijacking a virus (eg cow virus)
Scientists like Yehoash Raphael (2005) and John Brigande (2008) and KU Med researcher Dr. Hinrich Staecker (2009)
working on gene theraby.
- Dr Staecker announced at Jun 2009 HLAA that they now can change the number of hair cells they produce by changing the promoter
(ie. turning the dimmer switch on the atoh1/math1 gene up or down).
So I will say if they can find out how many hair cells needed by individual patient , then blavo, a cure is found !
Problems
- sound restored by Atoch1 are distorted because only 1 out of 2 types of hair cell are re-grow
- danger of developing into non-lethal tumour or lethal cancer (but now 'promoter' is possible solution)
3. Extracting and transplanting recently discovered brain matter who looked and behaved like ear hair cells
Problems
- unclear side-effect of taking out brain matter
- how to transplant into the small 5 mm cochlea
4. Drug
Some drugs being developed by some pharma companies for US Defence Dept for their soldiers to prevent hearing loss due to noise or to treat noise-induced deafness shortly after onset. Still development stage
- there are other coy eg GenVec
5. Programming surviving hair cells
6. Cochlea Transplant
Problem of connecting the 15500 hair cells nerves from cochlea to brain (Query : But have anyone find out whether there is a really a need to connect each hair cell nerve to the brain ?)
II. Delivery
Problems -
Cochlea only 5 mm
Cochlea filled with liquids (2 liquids)
Possibilities
By flooding the cochlea by injection into the ear
By nano technology
By hijacking a harmless virus - but body immune system may attack it first
By yet-to-be-developed micro transplant surgery
III. Clinical trials on humans
Too stringent and too long?
Block by ethical / moral issues ?
Should not be major issue : Once a cure or cures are found, some countries (like China) will spearheard and West will play catch-up again , like for stem cell treatments for blindness , eye and spinal injuries
IV. Funding
Should not be major issue : Once plausible cures found or plausible theories out, venture companies , investors and pharma companies will come in because the market is huge
Have you seen any ancedotals on stem cells? I made a post about this guy who got stem cells and it did restore some hearing.
ReplyDeleteDo you wear a HA in the left ear? Is your right ear normal hearing? Have you seen my audiograms in other posts in my blog? Lots of good posts to read and comment on.
I will keep everyone updated as I find more news on stem cells. One thing I can say is that stem cells works in animals, it's been tried on mice successfully. If the ancedotals are testament, some early humans have gotten stem cells successfully for deafness and other conditions.
hi
ReplyDeleteI am wearing a HA in my left ear and my right is good.
I have not seen any anecdote on stem cell. But I suspect someone somewhere in some lab, someone is already doing human trials.
For a small sum, someone can take out another life and we are talking about millions of dollars of return here ; the gain is too much for some unscrupulous scientist.
How much does the HA help? How does it compare to your good ear?
ReplyDeleteCheck my post titled "More information on stem cells to treat/cure deafness and diseases." and click the first two links.
I wouldn't be surprised if human trials were being done in secret, even in America. I read a comment on some blog where this guy says one of his friends got stem cells and can't disclose anything but he says that her hearing improved significently and that she is no longer deaf.
There's alot of late deafened people so desperate to hear again some would indeed risk their lives for a chance to hear. I read comments like this in blogs and they say they will be happy to be guina pigs for any deaf treatment/cure the first chance they get.
It's not yet ethical, maybe not even legal to yet perform stem cells to treat deafness this early in the game with too many unknowns. My friend emailed one of those stem cell scientist/doctor and he never replied back. The friend says it's hush-hush and he thinks they might be onto something very interesting that they don't yet want to disclose.
I will know that public human clinical trials are near when we see trials done on monkies with great results. I will let others be the first in phase I trials and depending on their results, I may join phase II trials myself.
There will be so many people applying for the early trials that most will have to wait for later trials. I don't even want to be in early trials since I must first make sure stem cells for deafness works good and is safe. Id also want to talk to some of those early adoptors and read all their audiograms.
hi
ReplyDeleteMy HA cost S$2400 , or about US $2000
Let's hope the secret trials are successful so that the legitimate ones can follow.
hi
ReplyDeleteThe main worry of this stem cell therapy is it can cause excessive growth or cancer. But if the tissue come from own body (eg bone marrow), then it is ok. Some Japanese has shown it worked using guinea pig. Let wait and see if there is any secret trial on this.
hi Dude
ReplyDeleteI have a plan to help the scientists to help people like us.
We can set up a non-pofit hearing loss research update wesite page to let scientists all over the world post their latest finding and provide contact details so that others can collaborate with them. In this way, there is no duplicate of research, and interested scientists can pick up from what others have stopped (due to eg retirement, lack of funding etc). I can help source for info but I do not know how to set up such a website.
The reason is that so many researchers / labs (from small student ones to large cross countries ones like Nano Ear (see http://www.nanoear.org/) that sometimes I think they do not know what others are doing. This will really speed things up and sort of not let it run by chance.
ReplyDeleteIf you want, you can e-mail me at wongtanlim3@yahoo.com to discuss or you can post here.
How much does the HA help? How does it compare to your good ear?
ReplyDeleteDid you read my other posts in my blog?
The scientists already have their own websites and if not, they want to keep it secret for now. We can look for HLAA for 2010 and get more answers.
I plan to use cells from my own body to regrow my ear hair cells. I will be sure it's safe before I get it done.
hi My Widex HA helps me especially it is able to translate the higher freq (which i cannot hear) to the lower freq, so that I can hear , say, some birds' chirping.
ReplyDeleteYes, I have read your other posts in your blog. They are every educational.
I really appreciate your efforts in keeping people like me updated. Thanks again.
hi
ReplyDeletehi
I come across a youtube on surgeons constructing a new ear to patients who have no outer ear. See only if you think you can stand surgery scenes.
When I see it, several thoughts cross my mind:
1. it makes me wonder really modern medical science can do wonders and give me fresh confidence to the current slogan in hearing loss circles that the question is not if but when a cure for hearing loss is found.
2. Also it makes me wonder whether they perform animal trials using mice, monkeys and then human trials. And the 'secrecy' around it : there is no call for human trial. So will treatment for sensoneural hearing loss by surgery / by implanting of stem cells go this route , and therefore we suddenly learn of this treatment without any hint ?
See
http://www.youtube.com/watch?v=rxH4BwRHrFo (external link, opens new browser window)
1. A cure will be found for every condition and disease by 2100. Scientists say humans could live anywhere from 200 years to thousands of years. I predict 2040 when deaf cure becomes advanced enough to give most people normal unaided hearing. 2020 for a 20db reduction in deafness.
ReplyDelete2. According to the HLAA scientists, they estimate monkey trials will take place around 2016. They think human trials will be a few decades away but another scientist gives it 10 years after monkey trials for human trials.
3. I wouldn't be surprised if a few dozen humans were being trialed in secrecy. They wouldn't be allowed to share their experience anytime soon. All we have are anecdotes, such as "my friend Mary who's deaf now appears to hear some sounds without her hearing aids and with hearing aids, she hears so much better" They think she may have been one of those early experimenters for stem cells.
4. It's possible we might suddenly learn of this treatment. For this to happen, there would need to have public human clinical trials with all results disclosed freely. Expect to see human clinical trials in a country like China before America. Also expect people to travel to other countries to get stem cells before it's available in their own country.
Thanks
ReplyDeleteI come across this just moments ago
:
http://groups.yahoo.com/group/PACT/message/19563
Already saw and posted that on my blog. I edited one of my posts to include this. Why don't those people post a blog about their wonder stem cell cures?
ReplyDeletehi
ReplyDeleteSomeone shared with me this website :
According to the web http://www.tonyawinchester.com/StemCellTreatmentCenters.htm (external link, opens new browser window) there is a center that deals with adult stem cells for various diseases, including sensorineural hearing loss for.
Do you have news about it?
The information center in India is:
Nichi-In Centre for Regenerative Medicine (NCRM) in Chennai, India (http://www.ncrm.org) (external link, opens new browser window)
It is the first Indo-Japan joint venture institute
NCRM uses adult stem cells to improve the conditions of Critical limb ischemia / ischemic ulcer of the leg, Ischemic heart diseases, strokes, and cardiomyopathy such as angioplasty, stents or bypass surgery; Spinal cord injury and neurological trauma, Cirrhosis of Liver, Oral Submucal Fibrosis, Alzheimer's disease, Parkinson's disease, Autism, Cerebral palsy, Sensory Neural hearing loss, and Motor Neuron Disease (ALS)
Contact: info@ncrm.org
I can't find anywhere on the site mentioning treating deafness. They treat many other diseases, many of which are life saving. I can see why they are moving forward even though that technology is highly experimental. It's worth risking your life to save your life. But for deafness, this may have to wait till 2020.
ReplyDeletehi dude
ReplyDeleteYes, I have also tried but cannot find. But the funny thingbis that it come out in a search engine. Perhaps they have removed it or it is hidden deep inside the web.
Any way , some more websites on stem cell.
See :
You did not provide any link but I found this posted in Mar 2009 :
http://blog.cordbloodbankingnews.com/2009/03/center-for-regenerative-medicine-cord.html (external link, opens new browser window)
It seem to be originated from a Italian team . See
http://www.medicalnewstoday.com/articles/120350.php (external link, opens new browser window)
I wish it every success
hi Dude
ReplyDeleteIf I put 2 and 2 together, I think the coy will be doing human trials on people with hearing loss with the cord blood they stored.
What do you think ? Good news for us right ?!