Overview
2022 has been a busy year on the awareness raising front, which is a brilliant feat for such a rare disease. With more awareness, there will likely be more patients diagnosed with superficial siderosis. My neurologist told me that he now has more patients, which is kind of relieving, as back in 2016 I was the only one. We’ve also seen an increase of new patients joining the Facebook group over the year, and the numbers slowly continue to climb. Here’s a summary of the things I’ve personally taken part in in 2022.
UCL ‘Living with Superficial Siderosis – The Patient’s Journey’
Dr Natallia Kharytaniuk, a PhD student studying the hearing element of superficial siderosis was awarded funding from University College London Engagement Train and Engage. Dr Kharytaniuk hosted a webinar focusing on the patient experience of superficial siderosis. A panel of experts including Professor David Werring (Neurology), Professor Doris Bamiou (Neuro-otology) and Dr Edgar Chan (Neuro-phycology). I took part in the webinar and talked about some of the ways I manage and cope with the hearing loss, and other things, such as pain and mobility.
https://www.ucl.ac.uk/stroke/patients-carers-and-public/infratentorial-superficial-siderosis-central-nervous-system
Rare Disease U.K. – Rare Disease Day Twitter Take Over
I can’t quite remember how this came about, but I was lucky enough to get the chance to take over Rare Disease U.K’s Twitter account at 7pm on Rare Disease Day. Such a great opportunity to raise awareness and Tweet all things superficial siderosis .
Neurological Alliance Co Production Group
Throughout the entire year I’ve been lucky enough to take part in the Neurological Alliance Co-Production Group. A group of 12 chosen patients from the 4 nations of the U.K., all with different neurological conditions. The aim of this is to drive and create a neuro task force in each devolved country, to improve neurological care. We may have different conditions, but we all have the same difficulties in getting the care we need.
https://www.neural.org.uk/blog/coproduction-week-working-together-to-back-the-1-in-6/
Coproduction week: working together to back the 1 in 6
Coproduction week: working together to back the 1 in 6
Coproduction week: working together to back the 1 in 6
Wales Online Article
Coproduction week: working together to back the 1 in 6
Emily from Wales Online, contacted me through my SSRA email address. She asked if I’d be willing to have an interview about superficial siderosis and how the covid lockdown has affected my care. Another great opportunity to shine a light on superficial siderosis and how it is a lifechanging condition.
https://www.walesonline.co.uk/news/wales-news/i-came-out-lockdown-huge-23344289
Coproduction week: working together to back the 1 in 6
Coproduction week: working together to back the 1 in 6
Wales Neurological Alliance
Some great opportunities came about through the Wales Neurological Alliance (WNA) in meeting with various politicians to discuss neurological care in Wales. I’ve also taken part in the WNA advisory group meetings throughout the year.
Coproduction week: working together to back the 1 in 6
Coproduction week: working together to back the 1 in 6
Morrello Interview
Attending Neuro-physiotherapy is one of the best decisions I’ve made since my superficial siderosis diagnosis. It’s been something that has boosted both my physical and mental health, and I cannot recommend it enough. I took part in this interview with Cei, the then public relations officer at Morrello, to talk about my neuro physiotherapy experience.
https://www.morrello.co.uk/2022/03/25/morrello-patient-superficial-siderosis/
My Neuro Survey Parliamentary Launch
The Neurological Alliances across the U.K. sent out a survey to gather information from neurological patients asking about the care they receive. Once the results were in, the three areas that stood out universally were access to information of the neurological condition, access to a specialist and mental health support. I attended the launch of the My Neuro Survey at Westminster in London, it was a great opportunity to network and raise awareness of superficial siderosis.
https://livingwithss.com/u-k-neurological-alliances-unite/
South Wales Argus Article
In 1998 when I was 8 years old, I had a brain tumour removed from the back of my head, and the operation is thought to have caused the bleed that resulted in me developing superficial siderosis. Tumours can also directly cause superficial siderosis, and even brain tumours are often misdiagnosed. I took part an interview with the ‘Brain Tumour Charity’, to help raise awareness of the symptoms of brain tumours, as early diagnosis and intervention gives a better prognosis. The article was published in the South Wales Argus.
https://www.southwalesargus.co.uk/news/20265613.newport-football-player-sees-dreams-dashed-brain-tumour/
Homoca Interview
Thanks to the team at Morrello I was asked to take part in an interview with Homoca, a world leading manufacturer of movement rehabilitation technology. At the Morrello clinic I’ve been using the C-Mill virtual treadmill to help improve my mobility, which is a continuous process due to the degeneration of superficial siderosis.
https://knowledge.hocoma.com/report/two-perspectives-on-the-c-mill-the-patients-and-the-therapists/
Two perspectives on the C-Mill: the patient’s and the therapist’s
Beacon Drug Repurposing Conference
Deferiprone is used off label in superficial siderosis, it’s not recognised by the regulators as a treatment to remove iron from the central nervous system. Superficial siderosis is a rare disease, and the Beacon Drug Repurposing was so relevant to the superficial siderosis community. I’m very thankful to have been asked to present my experience of obtaining and using deferiprone to treat this awful condition.
https://www.rarebeacon.org/drug-repurposing-conference/programme/
https://www.rarebeacon.org/conference-connections-confidence/
Same but Different ‘Days of Rare’
At the end of 2021 I took part in the ‘Days of Rare’ project by Same but Different, who are a community interest company that help to raise awareness of rare disease through photography and visual storytelling. My mum and I travelled up to North Wales for the shoot, and it was displayed at RAREfest22 in Cambridgeshire.
https://www.samebutdifferentcic.org.uk/rhys
