Getting involved and making connections is essential to raising awareness of superficial siderosis. We all have our own personal stories, but when there are clear links between issues, and multiple people with superficial siderosis have a common denominator, it’s a good idea to raise awareness in these areas. In this piece I’m going to talk about two events attended in the last fortnight; both close to my heart in themselves, but also a chance to raise awareness of superficial siderosis.
Cross Party Group (CPG) Event on Medical Research
Thomas, from Brain Tumour Research, invited me to attend the CPG event on medical research at the Senedd (Welsh Parliament). I first met Thomas last year when I attended The Neurological Alliance petition hand-in at the department of Health and Social Care in Westminster. My case of superficial siderosis was caused by a brain tumour resection I underwent when I was 8 years old, but the symptoms didn’t transpire until I was 21. The surgical procedure I had to remove the brain tumour is called a craniectomy, which is where the bone is removed and not replaced afterwards. The purpose of this type of surgery is to relieve pressure on the brain, but unfortunately led to superficial siderosis, and I know there are others who have had similar, if not identical experiences.
Something I feel strongly about is procedural change to stop this happening to anyone else; even if it’s just longer-term monitoring of the surgical sites to make sure they fully heal, it’s a step in the right direction. Pseudomeningoceles often form following craniectomy surgery, and these are known to cause superficial siderosis if they become symptomatic.
‘Pseudomeningoceles are abnormal collections of cerebrospinal fluid (CSF) that occur due to leakage from the CSF-filled spaces surrounding the brain and/or spinal cord as a result of trauma or surgery’ – Radiopaedia
Thomas and I were accompanied by Dr Ben Newland, who is currently engaged in a research project for Brain Tumour Research. Together we spoke with politicians and people in attendance about the much-needed improvement and understanding of brain tumour treatment.

Disability Pride Event
I didn’t expect to be invited to the Senedd at all, let alone twice in two weeks; but since superficial siderosis has various disabling features, I could hardly turn down the chance to advocate and get involved with other people in the disabled community. Kindly invited by my friend who works for SCOPE, a disability charity that advocates for equality, I had absolutely no idea what to expect. I ended up cycling to the Senedd in the recumbent trike with Pedal Power, a Cardiff based charity that provides various bikes and trikes so anyone can get involved. Like most people with superficial siderosis, my balance is severely impaired, hence why I use the recumbent trike.
Throughout the event I stayed with Pedal Power who have given me a new hobby in cycling after losing so much to superficial siderosis. It was fantastic to be able to advocate for something positive that has come out of my superficial siderosis journey. Pedal Power is much more than just cycling though, it’s a community of friendly people, looking to help people with various disabilities do something they can enjoy, in the prime location of the lovely surrounding parks, or at the sea front of Cardiff Bay. The locations of the two sites couldn’t be any better placed.

The event itself was really empowering, and it was brilliant to follow the British Sign Language interpreters. It was inclusive, accessible and really fun! The team at SCOPE did a fantastic job of organising a variety of acts and speakers to take the stage. It really did show that disability does not mean inability, and there are ways to include everyone. The First Minister of Wales, Vaughan Gething also gave a speech and echoed that he believes in this philosophy. Overall, it was an unexpected joy to have been in attendance.
