Tag: Metformin

The Metformin Trial and the Search for Funding by the MRC-NIHR for a  Efficacy and Mechanism Evaluation of Metformin

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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 the size of brain tumours.

As he mentions in the Foreword to her book,

Despite all her battles, Zoë agreed to take part in an experimental drug trial. Zoë was aware that there was a 50% chance that she may be given a placebo, but she was prepared to go through with extra tests and assessments because she understood that her contribution had the potential to further change the lives of many individuals with TSC.

And in the GOSH (Great Ormond Street Hospital) report, published in February 2021, says

Her results were encouraging, with a 38% reduction in brain tumour volume and a 75% reduction in seizure frequency during the course of the study.

As of December 2023, the NIHR ( National Institute for Health and Care Research), together with the MRC (Medical Research Council) were looking for funding for an  Efficacy and Mechanism Evaluation of Metformin to find if it is a safe and effective medication for TSC. And as far as I can see, now in March 2024, the search for this funding is still under way.

From our point of view, it certainly helped Zoë. Lets hope that funding and a research team can be found to confirm that Metformin is an effective treatment for those with TSC.

https://www.gosh.nhs.uk/news/gosh-led-metformin-trial-dramatically-reduces-seizures-people-tuberous-sclerosis/

July 2020 Zoë Finishes Her Book

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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 lot of hard work into writing it, not only revisiting her past and facing up to all the challenges she’d been through having Tuberous Sclerosis and LAM, but researching about those conditions to inform families and people affected by them, and the general public who probably had never heard of TS and LAM. We hadn’t until she developed them either . . .

On her way, she was supported by Dr Sam Amin who ran the Metformin trial at the Bath TSC clinic, which Zoë took part in. He kindly wrote the Foreword, and said:

‘I recall her positivity and determination not to be defined or limited by the condition which affected so many aspects of her life’ . . . ‘I cannot stress enough how important Zoë’s coping mechanisms have been in surmounting all the hurdles she has been faced with’ . . .’Zoë’s book has given me a deeper insight into TSC, from a different angle’.

Zoë also had the kind support from TSA CEO, Louise Fish, who read through the book before it was published, and Gill Hollis and Professor Anne Tattersfield who proof-read the sections on LAM.

Yes, she was so proud that she had got to the end, and we are very proud of her for writing it.

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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