LOTS Sufferers Combat Ignorance as Well as Symptoms

By Rachel Zuckerman

Published August 15, 2003, issue of August 15, 2003.
  • Print
  • Share Share

When people find out Shirley Webb has late onset Tay-Sachs disease (LOTS), their reactions have ranged from “But you’re older than 5 years old!” to “Why are you alive?” Once, at work, someone saw her pull away from her desk in her wheelchair and exclaimed, “I didn’t know you were crippled!”

At 66, Webb, a co-founder of the Late Onset Tay-Sachs Foundation, is among the oldest LOTS patients. Anticipating this year’s ninth-annual Late Onset Tay-Sachs Conference, which was held in Philadelphia in July, Webb said she looked forward to spending time with people who understood her often misunderstood disease.

“At the conference, we function like a family, even though we all have different mutations [of LOTS] and combinations of symptoms,” she said. “We all speak the same language.”

Although there are no definitive numbers, Judy Kaplan, the newly elected president of the foundation, estimates that there are 200 people worldwide who have the disease. The annual conference is often the only time that those afflicted can meet, commiserate and socialize with others who have such a rare condition.

Dr. Gerald Hurwitz, a psychiatrist who has treated LOTS patients and written about the psychiatric effects of the disease, led a stress-management session on the second day of the conference. Depression is a neurological side effect of LOTS, and coping methods of dealing with it were discussed.

Hurwitz stressed the importance of getting out of bed in the morning and partaking in some kind of physical activity that was possible for people with the disease, considering their physical limitations. (At least one-third of the session’s participants were confined to wheelchairs or used other devices to aid in their mobility.)

“Our bodies have a certain amount of energy,” Hurwitz said. “That energy needs to go somewhere if you don’t use it.” Hurwitz explained that patients’ unused energy stores can result in mood swings if not expressed physically.

Participants compared notes about keeping busy and getting out of the house, since many of them are not able to work outside the home. One man described how he volunteers at a school for disabled children because it puts his own illness into perspective when he sees people worse off physically then he is.

Another issue discussed was the frustration patients feel when the general public is ignorant about their disease, which is a genetic disease that can be inherited by someone whose parents are both carriers.

“Everyone knows what multiple sclerosis is,” said one woman. “But no one knows what late onset Tay-Sachs is.”

The 60 patients and their family members attending the conference knew too well the devastating effects of the disease, which include weakness, trembling and trouble with walking and speech. In addition to learning about the current advancements in research for treating LOTS, the conference was also conceived of as an opportunity for participants to get together, socialize and have fun. Participants took part in a Casino Day during which they gambled at roulette wheels for prizes and socialized with other group members at a 1960s-themed dance.

The LOTS foundation’s Kaplan, whose daughter Linda suffers from the disease, stresses the importance of social activity for patients.

“Disabled people are often very lonely,” she said. “People tend to shy away from them. This conference might be the only social activity they get all year.”






Find us on Facebook!
  • Law professor Dan Markel waited a shocking 19 minutes for an ambulance as he lay dying after being ambushed in his driveway. Read the stunning 911 transcript as neighbor pleaded for help.
  • Happy birthday to the Boy Who Lived! July 31 marks the day that Harry Potter — and his creator, J.K. Rowling — first entered the world. Harry is a loyal Gryffindorian, a matchless wizard, a native Parseltongue speaker, and…a Jew?
  • "Orwell would side with Israel for building a flourishing democracy, rather than Hamas, which imposed a floundering dictatorship. He would applaud the IDF, which warns civilians before bombing them in a justified war, not Hamas terrorists who cower behind their own civilians, target neighboring civilians, and planned to swarm civilian settlements on the Jewish New Year." Read Gil Troy's response to Daniel May's opinion piece:
  • "My dear Penelope, when you accuse Israel of committing 'genocide,' do you actually know what you are talking about?"
  • What's for #Shabbat dinner? Try Molly Yeh's coconut quinoa with dates and nuts. Recipe here:
  • Can animals suffer from PTSD?
  • Is anti-Zionism the new anti-Semitism?
  • "I thought I was the only Jew on a Harley Davidson, but I was wrong." — Gil Paul, member of the Hillel's Angels. http://jd.fo/g4cjH
  • “This is a dangerous region, even for people who don’t live there and say, merely express the mildest of concern about the humanitarian tragedy of civilians who have nothing to do with the warring factions, only to catch a rash of *** (bleeped) from everyone who went to your bar mitzvah! Statute of limitations! Look, a $50 savings bond does not buy you a lifetime of criticism.”
  • That sound you hear? That's your childhood going up in smoke.
  • "My husband has been offered a terrific new job in a decent-sized Midwestern city. This is mostly great, except for the fact that we will have to leave our beloved NYC, where one can feel Jewish without trying very hard. He is half-Jewish and was raised with a fair amount of Judaism and respect for our tradition though ultimately he doesn’t feel Jewish in that Larry David sort of way like I do. So, he thinks I am nuts for hesitating to move to this new essentially Jew-less city. Oh, did I mention I am pregnant? Seesaw, this concern of mine is real, right? There is something to being surrounded by Jews, no? What should we do?"
  • "Orwell described the cliches of politics as 'packets of aspirin ready at the elbow.' Israel's 'right to defense' is a harder narcotic."
  • From Gene Simmons to Pink — Meet the Jews who rock:
  • The images, which have since been deleted, were captioned: “Israel is the last frontier of the free world."
  • As J Street backs Israel's operation in Gaza, does it risk losing grassroots support?
  • from-cache

Would you like to receive updates about new stories?




















We will not share your e-mail address or other personal information.

Already subscribed? Manage your subscription.