Living with Neuropathic Pain: It Hurts!

Alicia Koedijk co-facilitates the Groote Schuur Hospital Pain Clinic’s THRIVE TRIBE, Peer Support Group. She has 20 years of lived experience with neuropathy and is an advocate for persons living with chronic pain and disabilities. She is an IASP member and a Global Alliance of Partners for Pain Advocacy (GAPPA) Advocate. Alicia is also a South African Depression and Anxiety Group (SADAG) Peer Support Group Leader for Students Living with Disabilities. Currently in her second year as a BA Anthropology & Psychology student at the University of South Africa, Alicia wants to specialise in Pain Management.

Fiona Talkington is a distinguished BBC radio presenter, best known for hosting the award-winning program Late Junction. She has presented live concerts from venues such as the Royal Albert Hall and Wigmore Hall and produced documentaries and talk shows for the BBC. Fiona holds a Master of Arts in Literature and the Visual Arts and a Master of Science in Creative Writing for Therapeutic Purposes (CWTP). She received the Royal Norwegian Order of Merit for her contributions to the arts and an honorary doctorate (D.Litt) from the University of Reading.  

Drawing on her personal experience with chronic neuropathic pain, Fiona serves as a patient partner in PAINSTORM and co-produces its podcast, PAINCAST.  

She has also participated in numerous SIGs for IASP and has facilitated numerous workshops for students and research groups with her focus on the communication and expression of chronic pain for individuals and in healthcare settingsand expression of chronic pain for individuals and in healthcare settings. In addition, Fiona has a forthcoming publication with Bloomsbury on the role of creative arts in enhancing communication between patients and clinicians. 

Jan Dirk Barreveld lives with his wife and two daughters in Utrecht, the Netherlands, where he works as a comic artist and illustrator of children’s books. He suffers from Primary Erythromelalgia as a result of a sodium channel gene mutation. When his hands warm up they become red and painful.

Jo Josh is a freelance communications professional specializing in translating medical and research information into plain language for mainstream audiences. Her background includes news and feature production for print and broadcast media, brand marketing, and crisis management. Since 2018, Jo has worked with the British HIV Association (BHIVA) on communications and advocacy with media, health systems, government, and HIV community organizations.  

She suffers from HIV-related peripheral neuropathy and edited language for “ACT OPEN,” a randomized controlled trial of online acceptance and commitment therapy for neuropathic pain in people living with HIV. In 2022, Jo provided plain language translations of research papers for IASP and is one of three patient partners for the PAINSTORM consortium (https://www.painstorm.co.uk), a three-year research project into the causes and mechanisms of neuropathic pain. She is a member of the Advanced Pain Discovery Platform (APDP).  

Jo’s roles include Data Safety Monitoring on the RIO study (bNAbs), CONNECT research into digital communications in sexual health, and patient communications for Surrey and Sussex Healthcare Trust as a member of its Council of Governors. She is a former Vice Chair of a NICE committee. 

Philip Cornish is a Consultant Anaesthetist & Specialist Pain Medicine Physician in Adelaide, South Australia. In 2015, he published an account of complete long-term relief of phantom limb pain. This was followed by publications detailing complete, long-term relief of pain in multiple presentations of chronic pain, along with detailed scientific explanations for these results. These findings lead to a different understanding of pain and a different approach to it. 

Stephen Hart's neuropathic pain is diabetes related. He spent three years training to be a nurse but then a year after qualifying gave it up to become an actor/ YouTuber/ radio presenter and HIV advocate. Stephen speaks publicly about living with HIV as one of the Positive Voices speakers for the HIV charity, the Terrence Higgins Trust. He is also a singer in an HIV choir, the Joyful Noise Choir, and has previously worked professionally in both London’s Westend and Broadway.  

Toufieka Kanasashi is a patient at Groote Schuur Hospital and an active THRIVE TRIBE member. She has lived with neuropathy since the age of 7, caused by aggressive Keloid scarring. Toufieka is an advocate for patients living with this rare condition.