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Corvallis, OR, United States
My personal obsession with prion diseases with smidges of music I like and rescue dog advocacy from a disabled Oregonian.


My hand. [click to enlarge]

Invisible Illness

I can't tell you how many times people have commented on my nails by exclaiming I chew off my nails. That's when I explain I was born with a rare syndrome that has manifested itself in permanently dislocated joints, funky fingernails, and glaucoma along with other symptoms. Do you know anyone with fingernails like this? The incidence of Nail-Patella Syndrome is believed to be 1 in 50,000 people. With 6 billion people on this third rock from the sun that would mean there are hundreds of thousands of individuals with this syndrome that are currently undiagnosed. They run the risk of immobility, blindness, and osteoperosis without knowing these symptoms can be monitored and controlled with preventative medical tests and/or drugs.

Nail-patella syndrome is a mostly invisible condition. The most tell tale signs are arms that don't straighten and malformed fingernails. That's a picture of my hand above and my unusual fingernails. The thumbs are the worst with only a sliver of a nail on one side of a nail bed. My index, middle, and ring finger have ridged nails that grow unevenly on both sides of the nail. My pinkies are normal as are my toe nails. It is quite amazing how we develop our hands while in utero. It appears that the thumbnails are the last to develop in a fetus. Notice that I am missing the creases in the top joint of each finger, too. I used to be extremely self conscious of my nails but with age it just doesn't seem that important. There are no serious life activities I can't do with missing fingernails but there are a few inconveniences. Forget about me picking up change off a countertop, knots drive me crazy, and opening a aluminum pop can is impossible. I never had a manicure and I can't let my ridged nails grow long lest they snag on something and start to bleed.

It is the invisible part of nail-patella syndrome that is so debilitating. The permanently dislocated elbows, knees, and pelvis, the spine curvatures and the resulting pain is the invisible part. I have become accustomed to being scrutinized as I exit my automobile while being parked in a handicap parking spot. I even had a few people angrily comment that I was parking there illegally. I have learned to not internalize people's comments mostly because they do not walk in my shoes and experience the chronic pain I tolerate every day.

It's wonderful to have an opportunity to make people aware of this invisible illness. Just because I am not in a wheel chair or missing a limb, or using a cane doesn't mean that I can't use the support and understanding of individuals who do not have the physical challenges of hidden, yet painful conditions.

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