Being an Adult with Crouzon syndrome


After having her final operation Jenny went off to university to study primary school teaching. She nearly did not finish her studies as she had a lisp from having her jaws put back in the correct position. Jenny  spoke how she did before her jaws had been re-a-lined. This lisp would worsen when she was nervous and it was thought that teaching might not be the best vocation for her. But upon explanation, she was allowed to continue and she had speech therapy to try to re-educate her tongue but it wasn't too successful.

Jenny enjoyed living away from home and being independent. She joined the local church and became involved with various Christian activities on and off campus. Her faith helped her to deal with life.

Jenny met her first boyfriend and future husband whilst she was at university. He attended her church and the university. It felt so wonderful to be loved and to belong to someone. Jenny's studies initially suffered because of her pre-occupation of being 'in love'. This man did not always treat her well but she looked past this as she loved being special to someone. This relationship seemed to make up for all the teasing and rejections JennyI had endured from boys over the years.


Jenny found her first year out as a teacher difficult. Her shyness and looking back, she identifies herself as having social anxiety, got the better of her many times. She was very self-conscious of how she looked, and even though she knew she looked 'normal' the 'deformed' kid still lived in her head. Jenny was interviewed for an article for the Australian Women's Weekly in her first year out. It was based on the craniofacial unit and featured some of the patients and Cher who was out in Australia for a concert. She found out that the media will write the things you don't want them to, and wrote a comment she had made about teaching, which on hindsight she wish she hadn't. She was embarrassed and self-conscious about the article when the students in her class brought it to school as 'show and tell'. Jenny was extremely nervous telling the children what the article was about as she had never had to tell people apart from doctors or friends.

From that point on whenever Jenny had to tell people about Crouzon syndrome she would get sweaty palms and lose her breath - she basically had panic attacks. She found it extremely difficult to talk about.

After a shocking first year of teaching, Jenny worked hard on her teaching skills and became a quiet achiever. She did further study and achieved a Bachelors Degree and a Masters Degree with Honours. She also received awards in both of these.


Jenny married her first boyfriend. The marriage lasted for 10 years. Before they were married there were many signs  which showed Jenny that this man was abusive, but she chose to ignore them. She wanted to be married. She wanted to be loved and she didn't particularly care what form it came in. In doing so, she let herself be controlled and emotionally abused. She attributes this to the Crouzons. As a teenager and then as a young adult, she yearned to be loved and accepted by a man. She felt that she needed someone who would not see her as just a face, but who would love her for who she was inside. Jenny knew going into the marriage that she had a 50/50 chance of passing on the syndrome and he did not want to take the chance. This added another barb into the festering wound. Over the length of the marriage Jenny had limited contact with her family and friends. She lost her freedom and independence and became even more shy, more lacking in self-confidence and developed a very low self-esteem.

On anti-depressants and suicidal, Jenny finally found the opportunity to leave and then courage to stay away. She divorced the man, did a lot of soul searching, picked herself up and moved on.

Soon after separating from her first husband Jenny met Joe on-line. She loved the anonymity of the internet and she liked that she could be herself without anyone seeing her. Joe and Jenny enjoyed talking to each other and had the same values. They decided to meet and Joe came out from the US to meet her. Before he came out Jenny made sure that he knew about her Crouzons and sent him many photos, taken from every perspective. He couldn't see anything wrong with Jenny which made her feel wonderful.

Jenny was very nervous meeting him and he was too. Once they got past their nervousness and the culture differences, everything was wonderful. They were married 10 months later.

Before the wedding Jenny explained to Joe about the 50/50 chance of passing on the syndrome in case he could not cope with it and because she knew that he wanted to have children. Joe said that he didn't mind because Jenny had turned out great and he loved h. My darling husband is my blessing.