Diana had a smile that would light up the darkest of rooms, scare off the shadows and fill your soul with warmth and light. In High School, she was an outstanding musician, selected first chair in the Fairfax County Schools honor band. She graduated from Virginia Tech and joined the work force as an executive assistant, a profession in which she excelled. She had a beautiful, full, happy life in the palm of her hand. It was joyful to watch her mature and blossom. But on the horizon was the dark cloud of CJD that none of us saw coming. It darkened our lives and took her away at the age of 29.
For me, her sister, I knew something was irrevocably wrong because her laughter changed; it lost its rhythm that was the soundtrack of my life and one I knew implicitly and miss greatly. For us, her parents, we witnessed on a daily basis her decline. Our trip down CJD’s merciless path started with cognitive changes at work. There were car accidents. She complained of changes to her vision. She started making simple mistakes at work and later more noticeable mistakes that someone as diligent and detail orientated as she was would never make. Her declining health forced her to resign from her job. With no job and declining health her parents became her willing caretakers.
The onset of the disease was insidious. Something was wrong but no doctor could really tell us what was wrong. It looked like a concussion, but after many doctors of many different specialties, she did not get better. There were numerous examinations and numerous tests. There were treatments and therapy, but she continued to decline. Her coordination quickly went downhill and eventually she was robbed of independent mobility. The same went for things like bathing and feeding herself. Her motor skills were affected which made her speech somewhat slurred. We had several doctors tell us that she was sick but they had no idea what it was and that our only hope was to go to either the National Institute of Health or Johns Hopkins. It took persistence but we were able to get her admitted to Johns Hopkins Hospital where she was diagnosed with CJD within 2 days. We were told at this point that she had less than 30 days to live. She died 14 days later. The diagnosis was shattering to our family. A year’s plus of trying to overcome whatever it was that had gripped her, the hope for a cure was snatched away in an instant.
The disease is like a quiet killer in the night- you are healthy and in the blink of an eye you are robbed of life. There’s are no clear indicators, you are put through countless tests, inaccurate diagnoses, and false hope. When the common diseases are ruled out all the while your health keeps deteriorating before your very eyes. In our case, we watched a vibrant, vivacious 27-year-old with all of life’s joys and possibilities at her fingertips have them snatched away and replaced by ailments that mimic symptoms of diseases suffered in general by the elderly like Alzheimer’s and Dementia. For our family getting involved with Strides for CJD was obvious because we needed a way to pick-up her fallen torch and keep Diana’s light burning. Thanks to the CJD Foundation, a brain autopsy was performed and the results used to further CJD research. We don’t want to hear of more people losing their loved ones to the disease that doesn’t discriminate, knows no mercy and has an 100% fatality rate. We’ve made strides with so many other diseases there’s no reason that this one should be allowed to shroud itself in obscurity and hopelessness instead of us shining light on it and striding towards a cure.
C Hunter
