In her Introduction to RARE, Zoë describes how someone else chose the pink stripy shell she wanted, leaving her with the slightly imperfect one, and draws a parallel to her life with TSC. She wouldn’t have chosen it for herself, if she’d had the chance.
At a distance the shell looks lovely, but close up the pink stripes are covered with a deposit of calcium masking the stripes and making it difficult to see the pattern. In fact I found it difficult to take a close-up to show the beauty of the shell.
Zoë felt very conscious of her Facial Angiofibromas which of course showed up more the closer she looked in the mirror, and she felt that everyone else was aware of them too. I did try to reassure her that if people didn’t know about them, they probably wouldn’t notice them, or think they were just some other ordinary facial blemish but for her they were the most outward symptom of TSC that she had.
The good news now from the TSA is that several pharmaceutical companies are developing treatments for Facial Fibromas. and one of them is carrying out research to assess the impact of them on the lives of people who have TSC. There are at least three companies developing topical creams and the first treatment may be licensed for there UK as soon as next year. The latest details will be posted on the TSA website, social media and in the Scan magazine.
Facial Angiofibromas definitely affected Zoë’s self-confidence. It looks like others will not have to suffer so much in the future.
Rare: A Journey of Self Acceptance by Zoë Bull 