When Jane Paritzky of Silver Spring found out her infant son, Ian, had Tay-Sachs disease, she avoided contacting anyone in a self-help group for five months.
"I felt powerless," she told a conference on genetic disorders earlier this month. "What was happening to Ian was happening to me. I couldn't protect my child, and that's what mothers do."
Now, 12 years since her only son's death, Paritzky considers support groups part of her life. She counsels cancer patients and their families and works with the National Capital Tay-Sachs Foundation.
With proper structure and flexible goals, support groups for the genetically disabled need not be gripe sessions. They can evolve into powerful political or personal advocacy groups, dispensing hope along with crucial coping skills.
This was the message earlier this month to volunteers from organizations representing more than 80 different genetic disorders, plus health care providers and victims of genetic disorders, at the first national genetic diseases symposium in Washington. Sponsored by Georgetown and Johns Hopkins Universities with the March of Dimes, the four-day conference featured a variety of workshops, including one on starting and sustaining local and national self-help networks.
"When you join a self-help group, you give help, get help and help yourself," said Frank Riessman of the National Self-Help Clearinghouse and a sociology professor at City College of New York.
Research indicates that self-help groups may have profound, positive physiological effects on individuals by decreasing isolation, strengthening the body's immune system and making members less susceptible to illness themselves, Riessman said.
Gradually the person who seeks support from a group becomes a care giver himself, helping newly diagnosed victims of genetic disorders or family members through crises.
Genetic disorders affect at least 5 percent of the adult population of the United States. And although many, such as sickle cell disease, Down's syndrome, cystic fibrosis, hemophilia and Alzheimer's disease, are well known, others, such as William's and Fragile-X syndromes, are only remotely familiar to most physicians.
These victims and their families, in particular, often benefit from self-help groups that provide the crucial support to deal with "profound or sudden changes in a diagnosis or health care requirements," said Sheila Convis of the Cystic Fibrosis Foundation.
Leonard Sawisch, a dwarf representing Little People of America and the supervisor of economic development for Michigan's Department of Rehabilitation, said each self-help group should recruit sensitively, considering the individual needs of potential members.
"You want to handle self-help indirectly," he said. "Don't hold a meeting specifically to discuss 'dwarfism' because people won't come." Rather, pull interested persons to group sessions by athletic and social events, or by scheduling speakers on topics sure to attract -- like making school systems and insurance companies more responsive to patient needs. The interaction and problem sharing will then evolve naturally, Sawisch said.
"Offer help in a way that people can accept it," said Pete Schwartz of the National Down's Syndrome Congress. Many men have trouble joining groups, he said, even those directly relating to their children's illness. "It's part of preserving the macho image."
But of the three functions of self-help groups -- social support, advocacy and education -- "it's easier for men to go into an issue fight or an advocacy role . . . Feelings will come out while in pursuit of a task," said Schwartz, whose son Matthew was born with Down's syndrome.
Other suggestions for starting and maintaining groups include:
Advertise group meetings or try to find other parents or patients through hospitals, clinics and pediatricians.
Be flexible. Members need to feel "they own the group," so adjust to their needs.
Provide practical "how to" skills. Possible topics include: filing insurance claims and other medical paperwork, lobbying Congress or local school boards, getting answers from physicians and hospital staffs and discussing death.
Adjust the group's focus as it ages. Continue to hold optional coping sessions -- especially for new members -- but focus other meetings on patient or family economic, sexual or health crisis questions. Resource
For information on specific groups call Joan O. Weiss at the Johns Hopkins Moore Genetics Clinic, 301-955-3122.