12/06/2026
Today I have made it to 53 years, having been told I had 15 months to live by my diagnosing doctor in 1997, when I was 24. Eternally grateful to Dame Prof Carol Black, Prof Chris Denton, Dr Kevin Howell and team Royal Free London NHS Foundation Trust
The top photo in this collage was taken at the recent annual family day Scleroderma Unit Royal Free Hospital. The bottom photo was taken when I had the pleasure of sharing the stage with Prof Denton, last autumn, for the biotechnology company, Relation, team building day, which was held on the CuttySark-Greenwich. What a day out that was, followed by weeks in recovery 😱
It is a full time job managing my symptoms and resultant disability. My hobby is banging the drum, highlighting the importance of medical research, when living with a life changing, rare disease, which has no cure 🥳
I am honoured to be the Royal Free Charity Ambassador for scleroderma, as well as a Royal Free visionary and delighted to feature in the legacy leaflet.
https://royalfreecharity.org/giftsinwills/
I am a patient voice on the patient public and inclusion group at the clinical research facility at the Royal Free hospital. .
As well as, I am a patient research champion with the National Institute for Health and Care Research NIHR Research Delivery Network.
I have served the maximum time allowed (6 years) on the NHS England clinical reference group (CRG) for MSK, as well as, the CRG for dermatology.
I am a patient advocate with the European Medicines Agency, sitting on the Scientific Advice Working Party (SAWP) and Committee of Orphan Medicinal Products (COMP) as well as being a patient information leaflet reviewer. I am also a patient advocate with EURORDIS-Rare Diseases Europe.
Over the decades, I have been featured in numerous media portals, including TV, radio and international newspapers.
Last year, I was delighted that Rare Disease UK Genetic Alliance published my poem 'More than you can imagine' into a poster format for the four nations parliamentary receptions for Rare Disease Day.
https://royalfreecharity.org/stories/volunteer-ambassador-showcases-scleroderma-poem-at-parliamentary-reception
'Living with a rare disease without a cure, is most character building, that's for sure' :
https://blog.raynaudsscleroderma.co.uk/2025/02/more-than-you-can-imagine-rarediseaseday.html
June 🌻
We NEED a cure and understanding of the cause to systemic sclerosis (scleroderma), NOW 🙏
Medical research provides HOPE. Hope that the cure, better understanding and improved treatments will become available soon.
My experience of taking part in clinical trials:
https://blog.raynaudsscleroderma.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html
https://blog.raynaudsscleroderma.co.uk/2018/09/medical-research-get-involved-take-part.html
https://royalfreecharity.org/how-we-help/research
Please donate to medical research to identify a cure and the cause of scleroderma, at the Scleroderma Unit Royal Free Hospital. Your donation will be used for medical research purposes only. Thank You 🙏
There are several ways as to how you can donate:
Via the Royal Free Charity :
Donation Page : https://royalfreecharity.org/donate
Choose your amount, then click, donate now.
Step 1, click on the box next to
'I'd like to donate to a specific appeal or fund'
Scroll down the menu until Scleroderma and Raynaud's option (last option in list). Click on this option.
OR
Leave a gift in your Will :
https://royalfreecharity.org/giftsinwills/
The Royal Free Charity provides a free Will writing service ☝️
OR
Just Giving Page :
https://www.justgiving.com/fundraising/sclerodermaunit-royalfree
Thank You 🙏
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