FounderI thought I'd update all of you on a few things we have been working on behind the scenes with @Steve, the rest of the staff and our Team Members, and also on what's been going on with me personally.
Welcome Tinnitus...
Some six years ago I became "one in ten." Tinnitus struck me out of the blue like it has many of us — in my case, a seemingly innocuous syringing procedure left its lasting mark. I remember how I dreaded the ringing ears at first, but became adjusted over time.
That is, until my spontaneous worsening and an additional tone I got. Things really changed at that point. Figuratively speaking, if someone was pinching me with a needle before, now they were hitting me with a hammer. Never stopping.
Personally, I just didn't know what a more severe kind of tinnitus was until mine became worse enough not to be able to be masked by the majority of sounds. And I have no doubts mine could still get worse; I don't believe in "upper limits." However I do know I'm fortunate not to have hyperacusis or hearing loss, etc.
0.6 / 100,000 — Uninvited Guest...
So, as if life wasn't already difficult enough with tinnitus and some other afflictions (for example my vision troubles have been giving me a lot of grief) and family issues in my life, early this July, I noticed a wound in my leg.
Wound in leg? No big deal, right? These things heal in a few days. That's what I thought.
The wound looked ugly, had pus coming out of it, with violaceous edges. First it wasn't too painful, but has since become exceedingly painful.
It wasn't too large, but I started getting worried when it didn't begin healing at all. Actually, it started enlarging. What also worried me from the get go was that I didn't recall hitting my leg or causing any trauma.
Some weeks later I saw a top dermatologist, probably one of this country's best.
She suspected a very rare disease from the first sight, "pyoderma gangrenosum."
The odds? I read that it's estimated 0.6 out of 100,000 people in the UK get this.
Having to join a club for such a rare disease, it was — and still is — hard to wrap my head around.
Pyoderma gangrenosum is a difficult disease to diagnose, and it often suffers from delayed diagnosis or misdiagnosis. It's diagnosed on clinical evidence and confirmed through a process of elimination of other possible causes.
I went through further testing with the doctor and the wound care clinic excluding other causes.
The diagnosis was confirmed.
Now I'm on highest strength topical steroids. They are making the wound edges look a little better, but it is likely I will be started on systemic treatment soon. I believe this includes long-term prednisone @ 1-2 mg / kg / day and possibly cyclosporine to go along with that, or either one tried first on their own. There are some other treatment possibilities, but I think she said this is the first line treatment.
Prognosis isn't generally too good, the cases I was told about took from anywhere of 6 months up to 7 years to heal (and two cases never did), and there's of course a considerable rate of recurrence too. Usually the ulcers are found in the legs, but sometimes they can develop all over the body. This is one of many diseases where they just can't predict how it will develop.
I'm taking pain meds and yet the pain can be really intense.
Combine squealing ears and messy eyes (severe pathological myopia with literally a ton of vitreous floaters) with unhealing intensely painful wound and you have a recipe for misery.
Long story short, life can throw your way some curve balls you definitely were not expecting... well, we all know that. It remains to be seen how I end up with all of this.
Our Future
We have been bogged down by many things. From spring 2015 till early this year, we were heavily involved in a legal case with Antinitus, a case that felt quite ruthless to be honest. We were very fortunate to secure UK's top lawyer and his legal team in this particular expert area. Nonetheless, those months were daunting and really made us realize how much we've put ourselves through.
Eventually, we are planning to publish a descriptive account of how that story unfolded. We feel it will make for interesting reading.
Long overdue (you wouldn't believe how tiresome it has been to try and find a team able to handle our brief, while fitting our budget), the new Tinnitus Talk will be emerging soon (by the end of October if all goes well). I know we've said this before. We've always hit roadblocks. Either we've been given quotes going up to astronomical +$100K, the folks just haven't had the required expertise or something else surprising has sidetracked us. Let me preface this that this will be the Phase 1 of our long-term plan. Phase 2 includes the coveted merger with what we have envisioned for a long time, the "Tinnitus Hub." We are very much aware of "change aversion"; we've taken every measure to make sure that the changes are for the better — hopefully liked by most.
In a way this is good because time has given us fresh perspective and new ideas. Some of the new features we will be presenting will include something that is going to further pave the way for our "patient research" agenda. With our member numbers, we hope this can make an impact.
A major undertaking this autumn will be working with Tinnitus Research Initiative on the Frontiers Research Topic "Towards an Understanding of Tinnitus Heterogeneity."
We are in the process of helping drafting patient messages for the research articles and also planning as effective outreach campaign as possible.
And you, our members and visitors, will be able to play your part. The prize is a conference award valued at $100,000 — and no matter win or lose, the prize is increased exposure and awareness for tinnitus research. I guess you all would think this is important.
Of course there is more than this being cooked up in our "laboratory," such as a collaboration in the works with a YouTuber who has almost 1M active subscribers and who wants to do their part in helping tinnitus sufferers. Not to mention something quite significant that will involve most of the well-known organizations dealing with tinnitus working together, very much including us - all in the name of increased attention to tinnitus (and hopefully research funds as well).
Thanks for reading and for being such a supportive group of people. Onwards and upwards!
Welcome Tinnitus...
Some six years ago I became "one in ten." Tinnitus struck me out of the blue like it has many of us — in my case, a seemingly innocuous syringing procedure left its lasting mark. I remember how I dreaded the ringing ears at first, but became adjusted over time.
That is, until my spontaneous worsening and an additional tone I got. Things really changed at that point. Figuratively speaking, if someone was pinching me with a needle before, now they were hitting me with a hammer. Never stopping.
Personally, I just didn't know what a more severe kind of tinnitus was until mine became worse enough not to be able to be masked by the majority of sounds. And I have no doubts mine could still get worse; I don't believe in "upper limits." However I do know I'm fortunate not to have hyperacusis or hearing loss, etc.
0.6 / 100,000 — Uninvited Guest...
So, as if life wasn't already difficult enough with tinnitus and some other afflictions (for example my vision troubles have been giving me a lot of grief) and family issues in my life, early this July, I noticed a wound in my leg.
Wound in leg? No big deal, right? These things heal in a few days. That's what I thought.
The wound looked ugly, had pus coming out of it, with violaceous edges. First it wasn't too painful, but has since become exceedingly painful.
It wasn't too large, but I started getting worried when it didn't begin healing at all. Actually, it started enlarging. What also worried me from the get go was that I didn't recall hitting my leg or causing any trauma.
Some weeks later I saw a top dermatologist, probably one of this country's best.
She suspected a very rare disease from the first sight, "pyoderma gangrenosum."
The odds? I read that it's estimated 0.6 out of 100,000 people in the UK get this.
Having to join a club for such a rare disease, it was — and still is — hard to wrap my head around.
Pyoderma gangrenosum is a difficult disease to diagnose, and it often suffers from delayed diagnosis or misdiagnosis. It's diagnosed on clinical evidence and confirmed through a process of elimination of other possible causes.
I went through further testing with the doctor and the wound care clinic excluding other causes.
The diagnosis was confirmed.
Now I'm on highest strength topical steroids. They are making the wound edges look a little better, but it is likely I will be started on systemic treatment soon. I believe this includes long-term prednisone @ 1-2 mg / kg / day and possibly cyclosporine to go along with that, or either one tried first on their own. There are some other treatment possibilities, but I think she said this is the first line treatment.
Prognosis isn't generally too good, the cases I was told about took from anywhere of 6 months up to 7 years to heal (and two cases never did), and there's of course a considerable rate of recurrence too. Usually the ulcers are found in the legs, but sometimes they can develop all over the body. This is one of many diseases where they just can't predict how it will develop.
I'm taking pain meds and yet the pain can be really intense.
Combine squealing ears and messy eyes (severe pathological myopia with literally a ton of vitreous floaters) with unhealing intensely painful wound and you have a recipe for misery.
Long story short, life can throw your way some curve balls you definitely were not expecting... well, we all know that. It remains to be seen how I end up with all of this.
Our Future
We have been bogged down by many things. From spring 2015 till early this year, we were heavily involved in a legal case with Antinitus, a case that felt quite ruthless to be honest. We were very fortunate to secure UK's top lawyer and his legal team in this particular expert area. Nonetheless, those months were daunting and really made us realize how much we've put ourselves through.
Eventually, we are planning to publish a descriptive account of how that story unfolded. We feel it will make for interesting reading.
Long overdue (you wouldn't believe how tiresome it has been to try and find a team able to handle our brief, while fitting our budget), the new Tinnitus Talk will be emerging soon (by the end of October if all goes well). I know we've said this before. We've always hit roadblocks. Either we've been given quotes going up to astronomical +$100K, the folks just haven't had the required expertise or something else surprising has sidetracked us. Let me preface this that this will be the Phase 1 of our long-term plan. Phase 2 includes the coveted merger with what we have envisioned for a long time, the "Tinnitus Hub." We are very much aware of "change aversion"; we've taken every measure to make sure that the changes are for the better — hopefully liked by most.
In a way this is good because time has given us fresh perspective and new ideas. Some of the new features we will be presenting will include something that is going to further pave the way for our "patient research" agenda. With our member numbers, we hope this can make an impact.
A major undertaking this autumn will be working with Tinnitus Research Initiative on the Frontiers Research Topic "Towards an Understanding of Tinnitus Heterogeneity."
We are in the process of helping drafting patient messages for the research articles and also planning as effective outreach campaign as possible.
And you, our members and visitors, will be able to play your part. The prize is a conference award valued at $100,000 — and no matter win or lose, the prize is increased exposure and awareness for tinnitus research. I guess you all would think this is important.
Of course there is more than this being cooked up in our "laboratory," such as a collaboration in the works with a YouTuber who has almost 1M active subscribers and who wants to do their part in helping tinnitus sufferers. Not to mention something quite significant that will involve most of the well-known organizations dealing with tinnitus working together, very much including us - all in the name of increased attention to tinnitus (and hopefully research funds as well).
Thanks for reading and for being such a supportive group of people. Onwards and upwards!
Member
By the way, everyone: 
for that!
