An Exclusive Club

Very few things in this world can claim not to be represented on the internet. Probably the simplest, and crudest, gauge of web presence would be the availability of a domain. Type any permutation of the words New, York, Real, Estate, Apartments, and Buildings as a web address. It will assuredly be taken. But the level of occupancy in domains extends far beyond the economically sensible. Try “horse farts,” “big turkeys”, “apricot recipes” or “toilet plungers”. Truncate the spaces, append a “.com” and you will find a domain owned, if not occupied.

Arthritis.com, Arthritis.org, Arthritisinsight.com, and Allaboutarthritis.com constitute a small sampling of the many Arthritis-related domains. I was surprised recently, however, to find that my condition is sufficiently lonely as to lack its own web site.

There is one paragraph on “Hashimoto's Encephalopathy” at Wikipedia. There are many publications accessible through a simple google search. But not one site on the internet appears to exist dedicated entirely to the condition. Not even a squatter has found the time to purchase any of the domains “autoimmuneencephalopathy.org”, “autoimmuneencephalopathy.com”, “hashimotosencephalopathy.org”, or “hashimotosencephalopathy.com”. As I write this I decided to type into the address bar the name of a random color followed by a random animal. I chose “pinkleopard.com”. It's taken, a cyber-storefront for “two modern moms” who make “quick and comfortable” tops to be worn “after carpool, after dinner, or after sex”.

For nearly any straightforward name you can think of, some idiot has purchased the domain. Yet not one person on the planet has been compelled to spend seven dollars to secure the rights to even one of the names of the particular disease with which I happen to be afflicted This, more than the limited case history, or the presence of only one dedicated clinic in the world epitomizes the unique sort of loneliness that sufferers of autoimmune encephalopathy (if I may speak for all... 100? 1000? 10,000? 600,000?) experience.

In all fairness, the internet is not entirely devoid of content related to this disease. But the top two hits are an about.com article and a page on the site thyroid-info.com (a 1980s-looking hodgepodge of a site by patient-advocate Mary Shomon using depracated html) in which Beverly Seminara, a patient advocate and sufferer of the disease with the noblest intentions shares her experience and compiles links to case histories. Even this site, primarily devoted to my music, has made it on to the second page of google search results for "autoimmune encephalopathy".

What is totally lacking on the internet is a site that does the following: feature an organized, sortable aggregation of case histories, studies and publications; provide a forum or other online community utility dedicated exclusively to the disease; maintain a degree of legitimacy by abstaining from offering unqualified medical advice.

So, I've decided to build it myself. The term Hashimoto's Encephalopathy is a misnomer and should not be used, but to concentrate attention on the new site I've taken the domains hashimotosencephalopathy.org and hashimotosencephalopathy.com off the table and redirected them at the future home for all things considered with autoimmune encephalopathy: www.autoimmuneencephalopathy.org.

I believe that this is an important task, in an age when most information is gotten through the internet. Hopefully the site will be a resource for patients and doctors, an outlet for specialists interested in, publishing on, or researching the disease, a community for patients to find support and share experiences and more. Maybe down the road it could serve a vital purpose to our tiny community.

Please have a poke around, drop a note, make a suggestion.