Cohn Family Panel
  

Leslie, Loma, Michael, and Richard Cohn discuss life with HSS
   

Family Copes With HSS For Over Two Decades
 

Leslie Cohn sometimes feels like the healthy-looking person who legally parks in a handicapped spot and then gets yelled at by some over-zealous person who thinks she’s cheating. Leslie has HSS, but it doesn’t show. By contrast, her brother, Michael, who also has HSS, readily shows several distinguishing characteristics of the disease. He has difficulty speaking, he has trouble walking, his muscles spasm. Leslie’s primary problems are visual impairment and weak ankles. She couldn’t see the blackboard in school. She can’t drive. Even so, she is not one to give up.

Leslie has coped with HSS for 22 years by having a sense of humor, caring parents and focusing on what she can do, not the things she can’t, she said. "I look at the disease as part of my life, not as my life," Leslie told participants at the First HSSA International Family Conference. She appeared on a panel with Michael and her parents, Loma and Richard Cohn, who are now divorced.

Growing up in a family where two older adopted brothers did not have HSS made her realize how important it is for parents not to become so involved with the HSS child that they ignore the healthy one. "The other child who doesn’t have the disease is just as important as the one who does," she said.

Her mother agreed but acknowledged that it is hard for stressed-out parents to divide their time equally. Like her daughter, she took comfort in humor, particularly the columns of Erma Bombeck. Loma joked that she "feels like a veteran of a 20-year war." When her children were diagnosed, there was no Internet, no easy place to get answers.

Richard said that families who live near university medical centers should seek the help of faculty members and researchers. They also need to be assertive about what they need. "Go back and raise hell and fight," he advised families at the conference. "You’re here because you got drafted by your kids." But, he said, "you are not alone. There are many support groups that can help."

It’s too easy to become consumed by the disease, Loma said. "The first five years are really hard," she said. "This disease was my compulsion." One day she realized she couldn’t have a conversation without mentioning HSS. She knew it was time to stop. "It’s not all devastation," Loma said. In many ways, she feels her family is blessed. Her children have less severe forms of HSS than many others. Leslie works and goes to college; Michael has set up his own business to teach business people and others how to respond to those who have disabilities. He uses slides in his presentation, and like the rest of the family, humor.

Loma recalled that when Michael, who is now in his 30’s, asked at age 10 if he would die of HSS, she said, "Probably, yes. But he didn’t ask when. "That is the big unknown every family faces, she said. "Answers are coming," she said. "I would urge you all to maintain hope."