(Courtesy of JCC MetroWest) A film about a little-known genetic disorder affecting mainly Ashkenazi Jews (those whose ancestors are from central and Eastern Europe) will be shown on April 22 during the ReelAbilities Film Festival at the JCC MetroWest in West Orange, New Jersey. The disorder, known as APBD (adult polyglucosan body disease), involves a missing or folded enzyme that causes toxic substances to build up in the body, resulting in life-changing thinking and memory problems, severe urinary control issues, and progressive loss of feeling in the arms and legs.
Symptoms of APBD usually begin between ages 35 and 50 and include numbness of the feet and hands, difficulty walking and loss of bladder control. It is often misdiagnosed as multiple sclerosis (MS) or ALS. Because of the difficulty in diagnosing this newly recognized disease, only 200 cases have been recorded worldwide.
The 12-minute documentary, “Life Through a Lens,” tells the story of Hollywood photographer Robert Zuckerman, his diagnosis of APBD, and his resolve to courageously face his challenges and live life to the fullest.
Dr. Jeffrey Levenson, a New York dentist (who grew up in Scotch Plains, New Jersey), and his daughter, director Ronete Levenson, produced the film to raise awareness about this neurodegenerative disease and to empower those living with challenges, physical and otherwise, to harness the same positivity exhibited by Robert in the film.
“As with many other genetic conditions, very few Jews have heard of APBD, but it should be as well-known as Tay-Sachs and Gaucher’s disease, which disproportionately affect the Ashkenazi Jewish community population. Because it is often misdiagnosed, many sufferers go seven or more years before receiving a proper diagnosis,” said Levenson, volunteer senior adviser to the APBD Research Foundation (https://apbdrf.org).
The foundation, which works to improve diagnosis and treatment of APBD and further research to find a cure, has developed a mnemonic device to remember the disease and identify its symptoms: A (Ashkenazi Jewish adult, man or woman), P (Peripheral neuropathy—numb, weak or stiff legs), B (Bathroom frequency beyond the norm, difficulty with bladder control) and D (Decreased energy).
Testing for APBD is simple. A saliva sample is collected in one’s home and sent to a lab at Columbia University in New York for analysis. The analysis is presently being underwritten by the APBD Research Foundation.
For further information and a free home test kit, email the foundation at [email protected]. Tickets for the film, which will be shown at 3 p.m. as a double feature with “Swim Team,” are available for $5 at https://jccmetrowest.ticketleap.com/reel-abilities-film-festival/. For more information about the film screening, contact Sarah Diamond at 973-530-3417 or email [email protected].
