Whether it be the recurring PIP forms that people with mental health disabilities have trouble filling out (or find it near impossible), having to go to hospital for emergency treatment, or a problem that promotes neurological overload in those with SS, a helping hand is more than desired, it is most often needed.

Several months back, my ‘Advocacy Network’ of help that I thought was solid was found to be weak. what was there for me totally disappeared when I stopped going to noisy places, this absance was due to the noise causing Tinnitus and migraine - it was then I discovered I was on my own. 

by Debbie Ebiniyi 

Have you ever smelled something so strong—burning rubber, cigarette smoke, or even something rotting—only to realise no one else around you can? If so, you might have experienced phantosmia, also known as smell hallucinations.

For some, it's an occasional annoyance. But for others, especially those with superficial siderosis (SS), it can be a recurring and unsettling symptom, leaving them questioning their own senses.

Andrew Short Story by Samantha Short and Debbie Ebiniyi

A Life-Changing Accident:

In November 2008, when Andrew was out riding with a friend he had a motorcycle accident. We don’t know for sure what happened, no one witnessed it, but based on his injury the doctors suspected he flipped over the front of the bike, landing on his head. He was extremely lucky that our friend he was riding with is a paramedic and was able to attend to Andrew before the ambulance arrived. Andrew was airlifted to Leeds General Infirmary, he had suffered an Atlano-occipital dislocation. It’s sometimes referred to as “hangman’s injury” because the head becomes detached from the spine.
 

 Superficial siderosis As A Rare Disease: 
 is an exceptionally rare neurological disorder characterized by the deposition of hemosiderin,
an iron-storage complex, on the surface of the brain, spinal cord, and cranial nerves. This
condition arises due to chronic bleeding into the subarachnoid space, leading to progressive
neurological impairments.

The prevalence of superficial siderosis is estimated to be approximately 1 in 1,000,000 individuals.
As of 2024, there are an estimated 300 diagnosed cases in the United States.

After gathering your opinions, we have settled on a date and location. This meet and eat will be held on Saturday 26th April by 12 noon at Pizza Express (Unit 3, The Whitehouse, 9c Belvedere Rd, London SE1 8YP). The prevoius date was a bank holiday. The 26th of April is suitable, so a long weekend for anyone wishing to travel and stay over for the event.

- By Jason Roberts and Phoebe Vine