Tag: TSA Outlook

Outlook Event April 22nd 2023

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April 10th 2023

This year’s popular event for those mildly affected by TSC will be in Leicester on Saturday, 22nd April. This year new attendees will be offered a ‘buddy’ who has attended before and can show them the ropes and introduce them to everyone.

Zoë was very nervous at her first meeting, as she says in RARE:

19th April 2015

When I arrived at the hotel, butterflies were starting to flutter in my stomach. I stepped into a small lounge area in the lobby where people were chatting away. Once I spotted a TSA staff member, she introduced me to a fashion degree student . . . He seemed mildly affected by TS too and I felt my insecurities about being accepted fall way. I spoke so freely to Tim and his mum and explained that I had never really spoken to anyone with TS before.

If you or your family are undecided about going, I’m sure that you find that you’ll meet people like you and can share your experiences.

At lunchtime I met some new faces, initiating conversations… ME? I felt fantastic and free. I spoke to another young woman who lived in West London, near where I went to university. We talked about our strengths and weaknesses at school concerning TS.

And, yes, Zoë is in this picture from before the Lockdown, right in the middle, surrounded by friends she’d made in the Outlook community.

You can find out more at tuberous-sclerosis.org/event/outlook-2023

One Year Since the Publication of RARE

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May 20th 2022

Since Zoë’s book was published last May, it’s been well received and read all around the world and has really helped people find out more about TSC and how Zoë lived her life with it.

She always wanted to share her experiences and wrote several articles for the TSA Scan Magazine, and also a piece for the TSA 40th anniversary event at The Oxford Belfry in September 2017 which is shown above and a bit clearer here, below.


Zoë wrote about the difficulty of living with TSC when on the outside she appeared quite normal with a degree and a job, whilst inside, she was worried that society would try ‘to pick out something wrong with me’, like her imperfect complexion. She likened it to having a ‘double life’: the independent one of work and socialising, and the traumatic one of having TSC and clinic appointments. She said it felt horrible to to recognise that ‘I may not always be normal’, but she was grateful for all the medical support that she received.

However, she could see that this ‘double life’ meant that she could use all her skills and knowledge from both areas of her life and combine them into ‘something great’ in her work with Mencap. And she was so happy that they didn’t know there was anything wrong with her, she was ‘just Zoë, their support worker and key worker’.

Always optimist, she said that although TSC and LAM had resulted in some ‘tumultuous experiences’ for her, ‘many good things have come out of it’.

One of these things was the knowledge and experience that enabled her to sit down and write her book. The sad thing is that she never lived to see it published, although we edited it together and she chose the cover photos. I wish she could have seen it and held it in her hands. She would have been so very proud.

Zoë’s TSA TSC Interview

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April 16th 2016

I can’t believe that it’s nearly six years ago since I drove Zoë to the Outlook event at the Oxford Belfry Hotel. She was feeling apprehensive about the day because it was to celebrate people with TS as it was the 20th anniversary of the Outlook group for mildly affected adults, and her TS was something she would normally be hiding away.

However, she was soon greeted by some original Outlook members who she’d met before and and other familiar faces that she knew. Feeling happier, she talked to a young woman and her mother. It was their first visit to an Outlook event and she reminded Zoë of herself a few years before, ‘awkward but excited’. Zoë also found out that she attended the same clinic at Bath, and had taken part in the same Metformin trials that she had.

After lunch, she felt nervous again because she was going to have a video interview with Tanya, the Volunteer Coordinator, who soon put her at her ease in a comfy leather chair which made her feel she was on Breakfast TV.

This is what she wrote in her book, Rare:

Everything I imagined saying, all those worries and negativity, went out the window. Instead I spoke about the confidence these events were giving me and how being a part of something has helped me feel less alone. As I was talking, I realised that I had been isolating myself by not accepting the advantages of being involved in a support group for such a rare condition. Why make myself more of an outcast than I need to?

It’s interesting to think, isn’t it, that as she was talking so confidently, all these thoughts were going through her head.

Zoë described what it was like to be mildly affected, and how she hoped that her experiences would help others. She added that, because of this, she found she could sympathise with the people she looked after, and the staff she worked with, in her role at Mencap. She said too, how attending the Outlook events had given her more confidence, and also how volunteering with the TSA had given her a chance to help others whilst putting her photography skills to good use. Lastly, she said that as she recovered from lung surgery in Guy’s Hospital, she decided to write a book to help people with TSA, and their parents, to understand more about the condition.

Here is the link to her interview so you can see it for yourself. https://www.youtube.com/watch?v=KWSbiGC9QpI

Zoë the Photographer 2

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April 2016 1920’s Gala Evening

Zoë had been invited to take individual photos of everyone at the 1920’s Gala Evening to celebrate 20 years of Outlook, the special group for those mildly affected by TS. Again, she felt apprehensive, but was welcomed at the Oxford hotel, by a founder Outlook member she had met the year before. Another founder member talked about how Outlook had changed her life by giving her a positive outlook, and how she had learned to accept herself for who she was, which made Zoë reflect on how she had been learning to accept herself too.

She was pleased that her dad went along in the evening to help her set up the equipment and act as her assistant, and before she started her session, he took a photo of her in front of the grand staircase backdrop. Everyone was pleased with their photos which appeared in the Summer 2016 Scan Magazine with the comment that ‘A fun photoshoot by volunteer photographer, Zoë Bull, added a spot of glamour to the proceedings’. She loved her own photo so much that she put it in a pretty pearl frame and kept it on her printer.

I was so proud of it that I showed it to my friend who had brought round some dolls she had crocheted. I asked her if she could possibly make a one like the picture for Zoë. It’s amazing that she did it just by taking a few photos as a guide.

Although I actually forgot to give it to Zoë on Christmas Day, she was really pleased when she opened it on Boxing Day. The only thing she wanted me to do was to embroider on a smile which I happily did. The 1920’s Gala Evening had been a great success for her and had helped her on her journey to self-acceptance.

Christmas – TSA Virtual Outlook Festive Special 2021

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December 10th 2021

This year the TSA Virtual Outlook Festive Special for mildly affected adults with TSC is on Saturday, 11th December from 3.00 to 5.15. For further details, follow this link https://tuberous-sclerosis.org/event/outlook-festive-2021/ Don’t forget your Christmas jumper!

Zoë used to love Christmas and mentions it several times in her book, she also grew to love the Outlook events and I’m sure she would be writing some questions for this year’s quiz. The photo above is of her last year, sitting by her desk where she used to sit when she joined in the Outlook quizzes on a Saturday afternoon.