The National Institutes of Health Clinical Center, America's research hospital, is located on the NIH campus in Bethesda, Md. Through clinical research, clinician-investigators translate laboratory discoveries into better treatments, therapies and interventions to improve the nation's health.
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When I learned that the Sjogren’s Syndrome Clinic at NIH was looking for research subjects, I happily volunteered.
Having been diagnosed with Sjogren’s (pronounced show-grins) in 2001, I was very willing to be sliced, diced, poked, prodded, and scooped out to be examined under a microscope ~ all in the name of science.
Sjogren’s Syndrome, is a multi-level autoimmune connective tissue disorder that can affect any organ, tissue, duct, or joint, but the primary symptoms are dry mouth and dry eyes. I don’t mean uncomfortable dry eyes and “golly, I sure could go for a nice cool drink” dry mouth. It’s the kind of dry eyes and mouth you get from spending a week crawling across Death Valley on your hands and knees; only, it’s unrelenting. We also contend with sudden flare-ups. They can hit any time without warning. It causes pain, debilitating fatigue, and gives me "foggy brain." It may last only 24 hours, but has lasted as long as eight weeks. When it hits, I am unable to think clearly or perform the simplest tasks.
My Lab Rat Day started early; around 5:30, as I recall. (Usually, if I’m up at 5:30, it’s because I haven’t gone to bed yet.) However, due to the uncertainty of circumventing Metro’s SafeTrack program, I allowed plenty of time to get to NIH by eight o’clock.
I easily made it through the visitors’ entrance where I received my ID badge, then boarded a shuttle bus to the clinical building.
After navigating a maze of corridors and hallways, I finally found the admissions office. I knew NIH was a government organization, but was unprepared for the enormous amount of paperwork. I spent 45 minutes signing papers giving NIH permission to cut me up in to little bits and send pieces of me to research facilities anywhere in the world. I signed papers saying it was okay if they killed me during their research, take a few gallons of blood, and publish whatever they learned in medical journals or on The Reader's Digest medical humor page. After I sang The Star Spangled Banner, and pledged allegiance to the flag, I was told to report to the dental clinic.
I zigzagged through another maze of hallways and corridors, until I finally found the dental clinic, where I signed an additional stack of mind numbing paperwork.
Over the next several hours, they scooped out a hunk of tissue from my salivary glands, took samples from various orifices, did a complete physical, countless interviews, drained me, squeezed me, sliced me up, and stuck little pieces of paper in my eyes to measure the dryness.
At three o’clock, the staff thanked me for my participation, wished me well, and set me loose to muddle through one last confusing maze of hallways to find the Metro shuttle bus.
All things considered, I’m glad I volunteered for the study and hope I contributed in some small way to the research into Sjogren’s Syndrome.
(And also, very relieved I got out of there before they had a chance to grow an ear on my back.)
To know more about living with Sjogren"s and other autoimmune issues:
Just click on this link:
When I learned that the Sjogren’s Syndrome Clinic at NIH was looking for research subjects, I happily volunteered.
Having been diagnosed with Sjogren’s (pronounced show-grins) in 2001, I was very willing to be sliced, diced, poked, prodded, and scooped out to be examined under a microscope ~ all in the name of science.
Sjogren’s Syndrome, is a multi-level autoimmune connective tissue disorder that can affect any organ, tissue, duct, or joint, but the primary symptoms are dry mouth and dry eyes. I don’t mean uncomfortable dry eyes and “golly, I sure could go for a nice cool drink” dry mouth. It’s the kind of dry eyes and mouth you get from spending a week crawling across Death Valley on your hands and knees; only, it’s unrelenting. We also contend with sudden flare-ups. They can hit any time without warning. It causes pain, debilitating fatigue, and gives me "foggy brain." It may last only 24 hours, but has lasted as long as eight weeks. When it hits, I am unable to think clearly or perform the simplest tasks.
My Lab Rat Day started early; around 5:30, as I recall. (Usually, if I’m up at 5:30, it’s because I haven’t gone to bed yet.) However, due to the uncertainty of circumventing Metro’s SafeTrack program, I allowed plenty of time to get to NIH by eight o’clock.
I easily made it through the visitors’ entrance where I received my ID badge, then boarded a shuttle bus to the clinical building.
After navigating a maze of corridors and hallways, I finally found the admissions office. I knew NIH was a government organization, but was unprepared for the enormous amount of paperwork. I spent 45 minutes signing papers giving NIH permission to cut me up in to little bits and send pieces of me to research facilities anywhere in the world. I signed papers saying it was okay if they killed me during their research, take a few gallons of blood, and publish whatever they learned in medical journals or on The Reader's Digest medical humor page. After I sang The Star Spangled Banner, and pledged allegiance to the flag, I was told to report to the dental clinic.
I zigzagged through another maze of hallways and corridors, until I finally found the dental clinic, where I signed an additional stack of mind numbing paperwork.
Over the next several hours, they scooped out a hunk of tissue from my salivary glands, took samples from various orifices, did a complete physical, countless interviews, drained me, squeezed me, sliced me up, and stuck little pieces of paper in my eyes to measure the dryness.
At three o’clock, the staff thanked me for my participation, wished me well, and set me loose to muddle through one last confusing maze of hallways to find the Metro shuttle bus.
All things considered, I’m glad I volunteered for the study and hope I contributed in some small way to the research into Sjogren’s Syndrome.
(And also, very relieved I got out of there before they had a chance to grow an ear on my back.)
To know more about living with Sjogren"s and other autoimmune issues:
Just click on this link:
