If There's Ever Going to Be a Cure, We Need to Get Smarter

[threefirefour]

Tinnitus: it's extremely common, somewhat debilitating, we know what is causing it, and we understand the issue behind it. Seems like the stars are aligned; and a cure/treatment is around the corner, but there's two problems. The community and the lack of awareness. If we can fix these two issues then a treatment will come soon.

We need to get smarter about awareness. Everything else has an awareness week, why not tinnitus? If tinnitus became a lot more famous, and not just "that faint temporary ringing after a concert", then people who have it but don't know, will now know, and probably want a cure. Funding for cures will increase by a lot and get researchers the funding they need.

We need to get smarter as a community. I've said this a million times but the tinnitus community's biggest hurdle is itself. Not only do we not try to make our symptoms better, but we seem to discourage those who do. We also encourage habituation and pay for stuff like TRT. The fact is these aren't the way forward, and it's time we realize this. If we encourage newcomers to help fund research and raise awareness instead of "lel get used to it" then we will actually get somewhere. Vets have tinnitus, we could get support on that front, it's a growing epidemic, it's very common, and it's a huge problem. If Any other disability community were dealt this hand, they would have a cure/treatment by now. Now I wouldn't care except for the fact I'm one of you and I don't want to be held back from a cure because we can't function. We need to desperately get our sh*t together.

This will probably fall on deaf ears, but that's fine. I just hope whoever reads actually considers this, and realizes this is one of the main reasons why we're not getting anywhere with a cure. Hope this situation ends soon.

 

[Markku]

We need to get smarter about awareness. Everything else has an awareness week, why not tinnitus? If tinnitus became a lot more famous, and not just "that faint temporary ringing after a concert", then people who have it but don't know, will now know, and probably want a cure. Funding for cures will increase by a lot and get researchers the funding they need.

Have you actually searched for "tinnitus awareness week" before?

There's been one for many years - previously (before this year) it was held at different times, BTA held it in February and ATA in May.

This year the awareness week was held in February both sides of the pond as it was deemed it's more effective when it's occurring globally at the same time.

Next year the same will happen and we're already planning it with the BTA and ATA. More organizations will also be taking part, which is great.

Another thing worth saying is that a lot of people talk the talk but very few walk the walk. If you find the situation dire, please volunteer your time and/or money to these organizations or generally for the cause and start doing things to improve the situation.

 

[threefirefour]

Have you actually searched for "tinnitus awareness week" before?

There's been one for many years - previously (before this year) it was held at different times, BTA held it in February and ATA in May.

This year the awareness week was held in February both sides of the pond as it was deemed it's more effective when it's occurring globally at the same time.

Next year the same will happen and we're already planning it with the BTA and ATA. More organizations will also be taking part, which is great.

Another thing worth saying is that a lot of people talk the talk but very few walk the walk. If you find the situation dire, please volunteer your time and/or money to these organizations or generally for the cause and start doing things to improve the situation.

Hey I haven't heard of it. That's great. For once the tinnitus community hasn't dissapointed me. Maybe we could find a way to make it bigger, and quantify if it's helping getting funding for research.

 

[Markku]

So in the world the percentage of patients who have tinnitus is about 0.0003% of the world's population, too low.

Tinnitus is more prevalent than that.

However, when looking at the statistics, it's always puzzled me, and many others, how little traction tinnitus gets on the internet (and not just on the internet - offline too!). If you look at the Facebook groups for tinnitus, and combine all those member numbers together, it's just very few people discussing tinnitus compared to any other major condition.

And how few members American Tinnitus Association and British Tinnitus Association have (relative to the countries' population). It's peanuts, almost like tinnitus was an extremely rare condition.

Take a look at this:
https://www.theguardian.com/news/datablog/2012/apr/24/top-1000-charities-donations-britain

You won't find tinnitus on the list...

 

[threefirefour]

First, tinnitus is not very common, in this forum there are only 20,000 members for 5 years and they participate practically the same every day, there are no more important tinnitus forums, the second one I know, is in Spanish and there are 3,000 members for 5 about years running.

The tinnitus YouTube videos have very few visits, any other stupid video has more visits than these. Or any other disease's forum.

So in the world the percentage of patients who have tinnitus is about 0.0003% of the world's population, too low.


Second, it is true that we must promote research in finding a cure instead of sending the wrong message that tinnitus no longer bothers us thanks to a supposed habituation, which detracts from the desire to investigate a cure.


Third, tinnitus is much more complex than we think because in the life all has a purpose, I explain, it is common for all of us to know that we die the day it touches us, and for that day to arrive must be exist cancer, heart attacks, physical aggressions, and the suicide which many commit because of tinnitus another invention of life with a determined purpose.

>0.0003% of the population

(X) doubt

 

[Sen]

However, when looking at the statistics, it's always puzzled me, and many others, how little traction tinnitus gets on the internet (and not just on the internet - offline too!). If you look at the Facebook groups for tinnitus, and combine all those member numbers together, it's just very few people discussing tinnitus compared to any other major condition.

The cold reality is that a huge majority of people with tinnitus have it so mildly as to not be bothered by it, and those that have loud and intrusive tinnitus more often than not learn to live comfortably with it. These things, combined with the fact that it is not physically debilitating or life threatening, make it difficult to garner interest from not only the public, but even from most people who are afflicted with tinnitus themselves.

It's just not "sexy" in the same way cancer, strokes or multiple sclerosis are. It's really rather boring when you think about it from the perspective of outsiders.

 

[threefirefour]

The cold reality is that a huge majority of people with tinnitus have it so mildly as to not be bothered by it, and those that have loud and intrusive tinnitus more often than not learn to live comfortably with it. These things, combined with the fact that it is not physically debilitating or life threatening, makes it difficult to garner interest from not only the public, but from most people who are afflicted with tinnitus themselves.

It's just not "sexy" in the same way cancer, strokes or multiple sclerosis are. It's really rather boring when you think about it from the perspective of outsiders.

Sadly you're mostly correct. That and there's just no awareness. Remember that movie Baby Driver? I didn't like it at all but at least it's raising awareness for how awful tinnitus is. Hope people care about it more now.

 

[Markku]

Remember that movie Baby Driver? I didn't like it at all but at least it's raising awareness for how awful tinnitus is. Hope people care about it more now.

I have yet to watch it but the movie's premise of masking tinnitus by listening to loud music is shockingly insane.

Well - that aside, it's pretty cool a major blockbuster has tinnitus in the story.

 

[threefirefour]

I have yet to watch it but the movie's premise of masking tinnitus by listening to loud music is shockingly insane.

Well - that aside, it's pretty cool a major blockbuster has tinnitus in the story.

lol ikr? Probably how his tinnitus got so bad. I didn't like it because I felt it tried too hard to be edgy. Hate when movies do that.

 

[MBH]

Doctors need to express it out in the open, then more people would be aware. My case should making them concerned due to mine came out of the blue they think we'll if it's noise induce and I stay away from noise I won't get it hence a explained reason for deal with doc then have there cause because they know they cannot fix it. There is no medical understanding. I have it in the middle with lows and highs and I can say it is physical and emotional wreck on a person. And if there is no medical understanding then there is no treatment or cure. As they say to you deal with it.

 

[attheedgeofscience]

Well, over the years, there have been quite a few threads that started with "let's do something". Not much has ever materialized from any of those. But, for what it is worth, here is a bit of mixed advice and reflections that I can offer on the very subject:

• Influencing tinnitus research along with general awareness is best done behind-the-scenes. Don't expect massive financial support from the average member of the community itself - a shame given the +100 million chronic tinnitus sufferers around the world which could really "add up" (if everyone donated).
• Due to how uncoordinated and scattered tinnitus research is (along with the fundraising efforts), even informal low-key advocates can play a role. For me personally, that very fact, has actually been a motivating factor. Because it forces a person to be selective and opportunistic in terms of priorities and allocation of scarce resources.
• Because tinnitus research is best done behind-the-scenes and because of the apparent stigma that seems to be associated with acknowledging the condition (even from those who have it), t-shirt printing and the like are probably not the best way to go - who wants to own (read: "wear") a shirt that has "tinnitus awareness" printed on it?
• To contribute to the cause is actually as simple as scratching yourself behind the ear. For instance, the sister of now deceased Michael Haar (suicide), created the following awareness page on Facebook: www.facebook.com/groups/906577572815543. Put another way: if you really want to contribute, there is no reason not to really...
• Successful advocates have something most people do not: self-leadership. It is a very rare quality indeed (much rarer than people with a ph.d background). It may not be easy to spot people with those qualities from a distance, but an example of a TT-member with those qualities is @Dubbyaman. People with self-leadership do not wait for instructions, they take action by themselves. People with self-leadership do not wait to be invited, they invite themselves. People with self-leadership are equipped with a compass of inner guidance that tells them which path to follow.

And lastly, while it may not always be obvious, there are actually advocacy efforts going on ("big and small"). Just yesterday, a small informal group I created two years ago has overwhelmingly approved a renewed membership fee for its members in order to collect a modest sum of funds for supporting a variety of research related activities in the coming year. Hence the reason I am writing these very lines on a Tuesday evening in Europe.