Retinoblastoma Is A Mother's Anguish, An Activist's Cause

Actress Hunter Tylo is an advocate for early detection of retinoblastoma, starring in a series of public service announcements about the disease.

Hunter Tylo, a celebrated daytime television actress in the United States and mother of four, was sitting in church when she saw the white glint in her infant daughter's eye. Despite her access to the best health care available in the world, Tylo suspected that her child's pediatrician had missed something, that something was terribly wrong.

She was right. Katya had retinoblastoma, a childhood cancer that is nearly always fatal if not treated before it escapes the eye. With early diagnosis, the disease is highly treatable and, in most cases, saves eyesight and lives.

Katya, now 5, lost an eye to retinoblastoma. Hunter Tylo and her husband, Michael, responded to this personal tragedy by establishing an international organization that educates parents about the disease and the best treatments available worldwide. They joined forces with another Hollywood couple, Matt and Christina Ashford, whose daughter also had been diagnosed with retinoblastoma. As founding board members of Retinoblastoma International (RBI), the Tylos and the Ashfords are endeavoring to raise public awareness of the disease, while raising funds to help treat children from developing countries.

"Retinoblastoma is a double-edged sword of pain," says Hunter Tylo. "When something as devastating as this disease happens to your child, it is worth every effort to save even just ONE child's life and hopefully, their eyesight."

Retinoblastoma International is based at Children's Hospital of Los Angeles, California, where Dr. A. Linn Murphree is professor of ophthalmology and pediatrics; he serves as chairman of the board of RBI. Dr Murphree recently served as a Visiting Expert for INCTR, spending time at the Instituto Nacional de Pediatria in Mexico City.

Retinoblastoma International recently launched retinoblastoma.net to reach parents, families, medical professionals and key decision-makers worldwide. Over the next few months, the site will offer materials and plans to build a significant international network in the fight against retinoblastoma.

The Tylos also are using their celebrity status in the United States to get the word out to the 350 million viewers worldwide who watch the CBS soap opera, The Bold and the Beautiful. They are producing a series of public service announcements about retinoblastoma featuring Hunter Tylo and Matthew Ashford (Ashford stars on Days of our Lives). The PSAs, in English and Spanish, will air worldwide.

There are no precise figures for the number of cases of retinoblastoma occuring each year worldwide, but given that the incidence is likely to be higher in many developing countries, it is probably in the region of 12,000 to 16,000, and perhaps more. At least 90% of these cases occur in developing countries, where many children die from the disease due to delay in diagnosis or to a lack of expert medical care. In contrast, 97% of infants survive their retinoblastoma in more developed countries, although most have a moderate to severe visual impairment. Katya Tylo was just six weeks old when her illness was diagnosed, and it was already too late to save the eye. Parents are urged to seek immediate medical attention if they notice a white glow or glint in one or both eyes, or if their child has crossed or misaligned eyes. Both may be early signs of retinoblastoma.

In addition, the feasibility, cost effectiveness and utility of examining the retina (back of the eye) after dilatation of the pupil to screen young infants in developing countries for retinoblastoma should be examined. INCTR's Retinoblastoma Strategy group is presently exploring the reasons for late diagnosis, and is working to develop public education programs to improve early detection.