I just submitted my comment and my wife is going to submit hers soon. Please submit your comment before the deadline! Also, feel free to share your comment in this thread, or create your own as I did.
Submit comments here: http://www.regulations.gov/#!documentDetail;D=SSA_FRDOC_0001-0692
Thanks to Kismet for helping spread the word on this thread: Kismet's Thread
Here is my submitted comment:
My wife was diagnosed with type 2, or atypical, Trigeminal Neuralgia, about four years ago at the age of 26. It began from a facial infection that started roughly six years ago. Sadly, the infection manifested and the pain became unbearable the day following our wedding. She had been in pain for at least a year prior to our wedding, but her doctors assumed she was simply getting migraines.
She is lucky enough to be on SSD and has been for a couple years now. This is mostly thanks to one of our representatives who is intimately familiar with TN, but many people across the country are not so lucky and are denied SSD for TN. The money and medicaid she receives is far from optimal, but it's been necessary aid for us to not end up on the street and for her to receive the treatment she requires. When I say "requires," I unfortunately don't mean the aid she requires to be pain free, or back to the person she was prior to the infections, but rather, the aid she requires to have not committed suicide by this time.
The road to her getting SSD was not easy, nor was the road to her getting a firm diagnosis. Most doctors are not familiar with the condition, so it's no surprise that people outside the medical profession have never heard of it. It's a terrible disease I wouldn't wish on my worst enemy and I would take the pain from her in a heartbeat if I could. When I read the stories on TN community forums, such as livingwithtn.org, it breaks my heart that so many sufferers across the country are denied the most basic of support provided by SSD.
Please research the condition and add type 1 and type 2 Trigeminal Neuralgia to the Blue Book. Living with an invisible disability is difficult enough. Finding doctors familiar with the condition is difficult enough. TN sufferers certainly deserve to receive SSD just as much as any other person suffering with a disability. Please help them receive the support and aid they require to continue battling against this terrible condition.