Welcome to RARE, published on 20th May 2021. Details about how you can buy a copy can be found under The Book tab above.
This blog is dedicated to our wonderful daughter, Zoë, who sadly passed away on Easter Monday, 2021, not from TSC or LAM, but from lymphoma and a cardiac arrest just days before her 28th birthday.
Luckily, her book was finished and being published whilst she was in hospital. Her mission in writing it was to spread the news and inform everyone about her two rare medical conditions and to help those who suffer like she did with anxiety to find self-acceptance and improve their lives.
In this blog, I will be showing you the photos which illustrate her story, and I will be interviewing people who were part of it, and people and their families who have TSC or LAM to see how they have coped. If you would like to see your story here, please contact me via the Contact page.
Three Years since Rare A Journey of Self Acceptance was published
May 2024 Again, time has been passing so quickly, and it’s hard to believe that three years have passed since Zoë’s book was published. She put so much into writing it and it is still helping those diagnosed with TSC and their families come to terms with the life-changing effects it can cause. For those…
The Metformin Trial and the Search for Funding by the MRC-NIHR for a Efficacy and Mechanism Evaluation of Metformin
March 12th 2024 About ten years ago, Dr Sam Amin, a consultant paediatric neurologist, who saw Zoë regularly at the TSC clinic in Bath, invited her to join a double blind trial to see if Metformin, commonly given for Type 2 Diabetes, would reduce common symptoms of TSC such as the frequency of seizures and…
Two years since RARE was published
May 20th 2023 It is now two years since Zoë’s book, Rare – A Journey of Self-Acceptance, was published in which she described her life with Tuberous Sclerosis and LAM, and how she had come to accept having them.It is also two years since she died on April 5th 2021. Much has happened for people…
Outlook Event April 22nd 2023
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…
Knitting and Anxiety
August 24th 2022 As Zoë wrote in her book, 90% of TSC suffers can expect to develop mental problems, and anxiety is just one of them. It’s not surprising that it was such a big problem for her. Faced with first one, and then two, rare medical conditions, anyone would be come anxious about ‘upcoming…
Zoë at Mencap 2016 to 2021
June 30th 2022 Zoë was so proud of her job as a Support Worker at Mencap, helping men and women with learning disabilities and empowering them to lead independent lives. This picture shows that even through Lockdown, when not only were the people she looked after shielding from COVID, she was as well, and although…
One Year Since the Publication of RARE
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…
July 2020 Zoë Finishes Her Book
July 5th 2020 In July 2020, Zoë had finished writing her book, and to celebrate she found this flash card she used for counselling to pose for a picture. It says, ‘I feel a wave of enthusiasm for my achievements’, above a smiley face, and below that is says, ‘PROUD’. She had put such a…
Zoë’s TSA TSC Interview
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…
Zoë the Photographer 2
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…
Zoë the Photographer
January 2015 Cover Girl! In the last months of Zoë’s degree in Photography, she realised how much of her work was psychology related. She was beginning to be fascinated by the mind, and explored that in her coursework, images and essays. She couldn’t see herself as a business woman and saw herself more as someone…
Christmas – TSA Virtual Outlook Festive Special 2021
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…
The Shell and Facial Angiofibromas
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…
A Kidney Bleed and Embolisation
November 15th 2013 Here is the photo our neighbour, Betty, took of Zoë because she said she was looking so well after suffering a kidney bleed a few months before. As Zoë reflected in RARE, ‘Looking at the photo, I can really see the colour in my cheeks, compared to the photo Mum and Dad took of…
Local Coffee Morning Raises Nearly £300 for TSA
July 31st 2021 A big thank you to Julie Huntingdon and her team of helpers who held a coffee morning at the Whitchurch Art Café and raised £297 for the TSA, plus the sales of Zoë’s book which raised £60, split between the TSA and LAM Action as she had wished. A reporter even visited…
Kidney Embolisation
August 12th 2013 In August 2013, at the age of 20, Zoë suffered a kidney bleed, but there was no obvious bleeding, just a terrible pain in her side. We had no idea it was so serious and took her to an osteopath who sent us off to A&E where Zoë was assessed. She had…
Coping with Facial Angiofibromas
July 13th 2010 These photos of Zoë show her at seventeen and eighteen. In the first one on a Eurocamp holiday, she is happy and relaxed and doesn’t seem bothered by her Facial Angiofibromas. This is a far cry from the four-year-old Zoë who had the traumatic experience of having her face paint removed by…
Singing
June 30th 2011 – Zoë was awarded her Grade 6 certificate for Popular Music Performance with Merit. Zoë loved singing right from when she was little. I used to sing her songs in the bath and she would sing them straight back to me in perfect pitch, sounding far better than I ever had. She…
Zoë’s Seizures Start Up Again at Disney World
April 2003 Here we are on that warm Florida evening, about to enjoy Spaghetti and meatballs at Tony’s Restaurant, just like Lady and the Tramp. But soon after this happy moment, as Zoë describes it in her book, ‘…a subtle warm fuzzy feeling came over me and I felt light-headed, the blood rushing to my…
Harriet’s Journey
June 2019 ‘Hi, I’m Harriet, 26, and I met Zoë through having Lymphangioleiomyomatosis (LAM). To rewind, I was first diagnosed with angiomyolipomas (kidney tumours) when I was 17, with no prior issues with my health. I had no idea what it meant and it was completely terrifying to go through this experience as a teenager.…
Publication Day!
May 20th 2021 Today is Publication Day at last! Zoë would be so proud and excited. We are proud and excited for her. Thank you to everyone who has helped to make it happen.
Zoë’s Writing Journey
March 2020 From Zoë’s darkest days in Guy’s Hospital, she knew that she wanted to write a book to share her experiences and help others. She had always kept diaries and journals of her life with one, and then two, rare diseases, together with the exercises and notes she made about coming to terms with…
Carefree Toddler and Pre-School Days
1995 to 1997 Here are the two photos Zoë talks about when she is twenty-six. Anyone else would just see a cute little girl in a ballet costume, or one peeping from behind a toy car, but she sees only that she has a clear face with smooth skin. She says she ‘felt pretty and…
The Beginning of Zoë’s Journey
April 1994 Zoë was a happy healthy baby until a trip to Somerset at Easter when her brother and sister noticed her stiffening up and staring as they sat with her in the back of the car. Afterwards, it always seemed that she had these strange seizures in her car seat. We wondered if it…
Jane’s Journey
Zoë first met Jane at the Outlook meetings and joined her in the online Saturday Pub Quizzes during lockdown. My name is Jane Rogers nee Kelshaw. I am 46 years of age. I’m married to Phil who doesn’t have TS. I have a brother called John who does not have TS and his two boys…
Rare: A Journey of Self Acceptance by Zoë Bull 