Hidden Disability Not Believed

No one knew exactly what was happening to Dorothy Smaniotto of Ocean View, New Jersey. In November 2007, she was having breathing troubles and feeling unwell, and her doctor speculated a blood clot on her lung was responsible. But a hospital emergency room found no blood clot.

A month later, she began experiencing slurred speech and left-side paralysis. The EMT crew believed she had experienced a stroke, but the treating physician diagnosed a migraine. At the time, she was only 38 and not in a high-risk group for stroke.

It wasn’t until July 2008 when a physician diagnosed antiphosopholipid syndrome (APS). In a telephone interview, Smaniotto said, “That’s when I learned I’d already had two strokes and a heart attack.” By then, she had lost most vision in her right eye and would have another heart attack in months following.

A National Institutes of Health website defines APS as an autoimmune disorder often called “sticky blood syndrome,” which can lead to blood clot formation in veins and arteries. It’s treatable.

As for lasting effects from her strokes, she said, “I now have slower speech, short-term memory loss, and left side weakness. I stopped working as a pharmacy technician because my company considered me a liability (after the strokes). I enjoyed my job and had worked almost 25 years for the same company.”

With APS, she looks “normal” on the outside. One of her biggest frustrations has been talking with people who don’t think she has a disability.

She said, “I know people mean well when they say I don’t look sick, but sometimes I just want to scream. It doesn’t matter what’s happening on the outside. It’s what’s happening on the inside of my body (that causes problems).”

As if this weren’t enough, and unrelated to APS, doctors in 2008 also learned she had Braca-2, which is a family mutation gene causing breast and ovarian cancer. So Smaniotto had a hysterectomy and double mastectomy. Her sister had died of breast cancer and her mother of breast, ovarian, and lung cancer.

Smaniotto authored a book about her experiences, “The Burgundy Journey: Using Hope, Humor and Faith to Conquer Adversity, No Matter What.” Also, to find a cure, the APS Foundation of America this year asked Smaniotto to participate in a film documentary to help raise awareness and prod the National Institutes of Health into funding APS research.