Why create a website for attheedgeofscience?
After having successfully turned my life-changing situation around, and also after having participated in a number of dedicated advocacy efforts over the years, I decided it was time to chronicle the events surrounding that period of time and "immortalize" it all via a website. When I initially created this website in mid-2017, I reflected on the state of the online tinnitus boards and how I wished there would have been a resource like this one when I was struck with tinnitus in 2013. In the lead up to my first stem cell treatment, I had to spend two months assembling the few fragmented pieces of information I could get hold of as pretty much no one had ever done stem cell therapy for tinnitus at the time. And when it comes to online tinnitus forums, these are absolutely polluted with misinformation written by not-knowledgeable people who will type anything that fits the narrative of their agenda or state of despair. This same information then gets regurgitated by a new wave of members and then... voila, you now have to sift through mountains of unimportant information in order to find the bits you wanted...
Who are you and what do you do for a living?
I am a fairly average person with a not-so-average story. For the same reason, I am not sure how much it matters who I am or what I do. The important thing for me was to take the time to reflect on a few special years of my life and create a website as a kind of monument. In addition, I founded a small informal advocacy group where we remain involved in the promotion of tinnitus research. I will most likely engage in early-stage initiatives for a number of years to come ‒ permitted that the relevant occasions present themselves, of course!
As for my personal details: I am a Dane who has spent more than a decade living abroad (Switzerland and Germany). Age-wise, I am in my early 40s and career-wise, I have a long background working for large corporations (financial-reporting and turn-around strategy).
Which particular topics in medicine interest you?
In relation to tinnitus, I continue to follow the pharma company developments within the field of inner ear disorders, studies on prevalence statistics, niche research involving actual treatments with a curative aspect (read: reduction of tinnitus symptoms), and high-quality advocacy efforts. The rationale behind my interests has to do with the progression of the clinical trial landscape as well as what may be a latent tinnitus epidemic among the younger part of the population (likely driven by recreational noise exposure). There is some variability amongst the prevalence statistics on tinnitus and so it is not clear if there is an emerging problem and how big it is. But, so-called "hidden hearing loss" is believed to be on the increase (stated by Mr. Weber, CEO of Otonomy Inc, during several company presentations) and without any treatment for tinnitus or the ability to hear conversations clearly with background noise present (e.g. in an office setting), this trend is particularly worrisome. And especially so, considering the low priority there is on the part of health authorities (in terms of prevention and developing treatments). This situation has all the necessary elements for it to escalate out-of-control and become a problem not just for the individual, but also for society.
Concerning the above topics, some of my favourite literature/authors include that of noise exposure leading to accelerated ageing of the cochlea by Prof. Kujawa, revised statistics on hearing loss, and hidden hearing loss (which is still a new term within the ENT domain – so don't expect your "local doc" to know about it).
If I have questions, how do I contact you?
My website should answer most questions ‒ I certainly took the time to document all the facts. But for any remaining questions, I can be reached at: firstname.lastname@example.org