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Quality of life: Fatigue, Itch and Skin care, Psychological impact

Quality of life: Fatigue, Itch and Skin care, Psychological impact

13/09/2021 17:00

Speakers: Julia Scarisbrick, Jenni Burrows

Target: Patients organizations
Subnetworks: Lymphoid malignancies
Disease Groups: Primary cutaneous lymphoma

Julia Scarisbrick is Consultant Dermatologist at the University Hospital Birmingham and leads the Cutaneous Lymphoma Service. She holds an Honorary Chair at the University of Birmingham in the Institute of Immunology and Immunotherapy. She trained at University Hospital London and St Thomas' Hospital and has been a consultant since 2004.

Julia is active in both clinical and molecular research fields for cutaneous lymphoma, she has a successful translational research program, and is involved in the development and delivery of both academic and commercial clinical studies. She is Chairman for the EORTC Cutaneous Lymphoma Taskforce, Chairman and Trustee for the UK Photopheresis Society Charity, and Treasurer of the International Society of Cutaneous Lymphomas. She has published over 100 peer-reviewed articles, contributed to several books, and is involved in the development of clinical guidelines in cutaneous lymphoma.

Jenni Burrows is a Textile Artist and Art Teacher based in Cornwall, UK.

I have a BA(Hons) from the University of Ulster in Fine Art Craft Design and an MA in Contemporary Embroidery from the School of Art (London Metropolitan), as well as being a qualified teacher with a PGCE in Art and Design from the University of Brighton.

I have worked in Africa for Voluntary Services Overseas training students in Interior Design, Textiles and Garment Production.  I have received awards and bursaries including The Birkbeck Visual Arts Prize (2010) and shortlisted for both the British Holistic Medical Association Good Practice Award and Building Better Healthcare Awards (2008). I have exhibited at various venues throughout the UK including the Design Centre and Earls Court London.    

Since 2015, my art practice dramatically changed, and You'll Be Fine beginning as a form of 'practical mindfulness' in response to my diagnosis of a rare form of skin lymphoma - (Primary Cutaneous CD30+ Anaplastic large Cell lymphoma (ALK-)).

My practice and initial investigation were a coping strategy to enhance my quality of life throughout the long wait for diagnosis and therefore manage anxiety, uncertainty and the medical side effects of treatment, including my experience of itch. I visualised the cancer cells in vivid colours, shapes and textures. The process was an effective coping mechanism for me when thoughts became jumbled and out of control. It is also a form of communication and I have developed a collection of interactive textiles that illustrate the barriers and obstacles we face coping with skin lymphoma. I hope my practice can be seen as an inclusive approach that invites others into conversations and using creativity as a coping strategy for different challenges we face in life.

This continuing work led to a solo exhibition and co-authoring an abstract in 2017 with Dr. Danuta Orlowska for the European Organisation for Research and Treatment of Cancer Conference - (Cutaneous Lymphoma: Insights and Therapeutic Progress 2017). This subsequently led to an invitation to speak and deliver workshops for the Cutaneous Lymphoma Foundation Patient Conference in Washington D.C. in June 2018.

 In 2019, How Do You Wear it? A film illustrating my practice together with my diagnosis was selected for the Reel-to-Real Crafts Council International Film Festival 2019.

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