Such are the preliminary findings of the HSS Family Survey. The results were presented by Mike and Kris McGourthy of Middleboro, Mass., at the First International Family Conference in May. The McGourthys, who have three children - two with HSS - analyzed data from 37 families. They encouraged more families to obtain a survey from Patricia Wood, president of HSSA, so that more can be learned about the disease, its progress and potential treatments. Among the findings so far:

* 42 percent of HSS families reported that the onset of the disease occurred between birth and 3 years old.

* 27 percent were 12 or older at onset

* 17 percent were between the ages of 8 and 11

* 14 percent were between the ages of 4 and 7

* The vast majority, 92 percent, reported difficulties with speech

* 75 percent reported curving feet, 73 percent had swallowing difficulties and 57 percent said the hands were affected.

* Half reported scoliosis as a symptom, while 36 percent reported muscle spasms and 28 percent had seizures.

* Other symptoms, which occurred in less than one in four cases, included Retinitis Pigmentosa or optic atrophy, Attention Deficit Hyperactive Disorder and behavioral problems.

* The most commonly used drugs included Baclofen by 13 patients, Klonopin by 8 patients, Sinemet used by 7 and Tegretol taken by 6 patients.

* Gastronomy tubes (for feeding) were used in 12 cases with no complications reported; tracheotomies were done in 2 patients without complications.

* Results from pallidotomies were mixed, ranging from much improvement noted, to the condition possibly worsening.

* In 2 cases, leg tendon transfers helped but bilateral Achilles surgery was not helpful.

* Among non-surgical therapies, 32 either have gone to physical therapy or are still going; 28 have gone or are still going to speech therapy; 23 are going or have gone to occupational therapy.

* Others reported being helped by hydrotherapy, chiropractors, allergy testing, music and dance therapy and osteopaths.