An on-line survey ran from 29/7/18 to 4/7/18. Participants could volunteer if they were 18 or over and had Gorlin syndrome. We asked participants to respond for themselves. There were 39 responses, including one form an individual who said she was not diagnosed with Gorlin and had no BCCs in the past year. She has been excluded. Of the remaining 38, 23 were women.
There were insufficient numbers to do multivariate analyses or significance tests.
The use of Factor 50 sunscreen on the face, neck, ears, chest and arms, along with a hat, on sunny days was the most frequent current UV avoidance strategy. The use of more intense (daily use) or less intense strategies was not correlated with gender, duration of diagnosis or number of BCCs.
Psychological and social problems caused by GS were frequent, as previously reported. Externally located problems with work and relationships were associated with the number of BCCs in the previous year.
Adherence to a new drug regime was anticipated to be high for most people, particularly in individuals with long histories and those that had more assiduous UV avoidance strategies. The main hope for a new drug was to reduce the need for future BCCs and their painful and uncomfortable treatment.
Results of the summary are available at https://gorlingroup.org/gsg/wp-content/uploads/2019/07/REPORT-OF-GORLIN-UNCOVERED-July-2018-1.pdf