For more than 20 years, Tom Head has been one of the world’s leading Crouzon Syndrome self-advocates. As author of the original 1998 Crouzon Support Network FAQ and administrator of the world’s largest online Crouzon support community on Facebook, he has offered advice to generations of parents, teenagers, and young adults with the condition.
Now, in this unorthodox new guide, he offers his reflections on what life with Crouzon Syndrome means—and the often strange and humorous lessons it has taught him.