Support Group Starts for Nerve Disorder

Desiree Biesterfeld and Debbie McClelland want to inspire courage and hope for people suffering from the genetic disorder known as neurofibromatosis.

They have formed a support group that will hold its first meeting Nov. 11 at 7:30 p.m. at the east campus of Los Robles Regional Medical Center in Thousand Oaks.

McClelland’s 12-year-old daughter, Melissa, has lost much of her vision and has endured four 10-hour surgeries to treat the disease, which spreads tumors throughout the nervous system and can affect the development of other parts of the body. Neurofibromatosis is a little-known disorder that affects more than 100,000 Americans.

For Biesterfeld, the disease means she will have no children.

Those hopes were dashed behcause her condition was not diagnosed soon enough. She now has a large pelvic tumor that is wrapped around a major nerve.

“We want to deter people from doctors who don’t know about neurofibromatosis and educate the public,” Biesterfeld said.

Biesterfeld, 38, of Thousand Oaks, and McClelland, 39, of Oxnard said they found each other by accident. They are now determined to help others by sharing knowledge they have gained and supporting others grappling with the disease.

For more information about the support group, call 381-8577.