LBDA

LBD and Robin Williams: Shining a Light on a Little-Known Disease

Everyone knew it would take a celebrity to be diagnosed in order to bring Lewy body dementia out of the shadow of its “cousins” – Alzheimer’s and Parkinson’s diseases. We never expected a diagnosis in such a tragic manner to one so respected and loved as Robin Williams.

The beloved actor/comedian was found dead from a suicide in August of this year. At that time, we learned he had been diagnosed with early Parkinson’s disease (PD), but it would take the release of his autopsy a few weeks ago to reveal that Robin Williams brain showed changes more consistent with dementia with Lewy bodies.

Suddenly, the words “Lewy body dementia” were on everybody’s lips and the Lewy Body Dementia Association staff and experts were being interviewed by online news, newspaper and television reporters. LBDA issued a press release to explain the autopsy findings and the relationship between LBD and PD.

The LBDA Facebook page was more active than ever before and filled with heartfelt comments from caregivers and patients alike. The LBD community understood that Robin Williams’ diagnosis has served as a spotlight on this devastating, but little known, disease.

Because of the unprecedented media attention, the general public and healthcare providers will be more aware of the disease. In time, that may drive earlier diagnosis.

The conversation has definitely changed and awareness of Lewy body dementia is on the rise. LBDA will continue our efforts to inform the public, healthcare professionals and media about the importance of LBD. And one day, we will stop hearing the question, “Lewy Who?”