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Getting Ahead of Superficial Siderosis Slide show - the script



TSB slide 1:

Hi, I am Jason Roberts, the founder and manager of The Silent Bleed. The Silent Bleed is a charity raising awareness and funds to ultimately find a cure for the health condition, Superficial Siderosis, (otherwise known as  SS). With me is the charity Chair and fellow Trustee/Media manager Amanda Fearn.

To give you the 'nuts n bolts' of what we are about, I would like to tell you of my story – in brief, we shall also cover the broad strokes of the pathophysiology of the condition, at least the parts we understand.

Slide 2- Jason in hospital:

In 1982 at the age of 12, I had a brain aneurysm which at first put me in a wheelchair and through rehab and determination I got up and out of. I was left with several disabilities which in time I learnt to live with.

slide 3 -  Focused ambition:

13 years on, I became a personal fitness trainer, working in health suites helping many find wellness and fitness in their lives. I loved the work, seeing individuals progress within their fitness goals was my way of ‘paying forward’ the care I had received from the NHS.

Slide 4 - 6  What are the symptoms of Superficial Siderosis?

Let's take a look at some of the symptoms associated with SS.

Slide 7 What causes Superficial Siderosis?

Unbeknown to me ( as well as the medical world at that time), over a period of 30 years, iron from blood filling the void in my skull and brain (from the 1982 operation) seeped into the cerebral system crystalising, in simple terms, short-circuiting my nervous system - Imagine Bare wires with iron over them, linking the wires - that is what was happening to my neurological system, causing my old health problems to return, with a vengeance, bringing with it a host of other problems.

Slide 8 What causes Superficial Siderosis?

No one could explain what was going on until we met a Neurologist who, only two weeks previous had read a white paper on th

e condition of Superficial Siderosis. It seems the condition began in 2005 with my hearing loss, a little in my right ear then over two years total right ear, then a slow decline in hearing until 2013 when within a two-month period:

Hearing loss

Ataxia – bad balance

Tremor in R hand side of body

Double vision got worse 

Peristaltic tremors 

Poor digestion


Memory loss


Head and body shakes

A great deal of tiredness

…...suddenly decided to join the rest of the malfunctions!

(slide 8 - What causes Superficial Siderosis?)

(slide 9 - How is the diagnosis made?)

The primary way to make the diagnosis of SS is by MRI. Here is an MRI shot of the brain and brain stem, the cerebellum and the cortex, see the  dark, black deposits that's the hemosiderin (iron) that we're talking about. It's unmistakable on the MRI. You don't see these kinds of deposits in any other condition, and so if the patient gets an MRI for any reason, for hearing loss, balance problems, whatever, the radiologist should be able to identify this particular pattern and make the diagnosis of Superficial Siderosis.

The lumbar puncture is an important test to see if you're actively bleeding. So, if you've undergone a procedure, for example, to fix the problem or had a bleeding tumour resected, the question would be, "Is there ongoing bleeding?" The only way to find out is to do a lumbar puncture, which involves inserting a needle into the lower spine, well below the end of the spinal cord but well within the spinal sack, spinal fluid would be withdrawn and analysed. Fresh blood can be detected within two to three days of a bleed. The trauma is mostly in the spine, in the back, and in the neck. 


I had known Jason for some time and recognised the dramatic decline in his health so I sought out information on this disease however, there was very little out there, what I did discover was that at Johns Hopkins University in Baltimore, Dr. Michael Levy (an assistant professor and a neurologist), also had patients with this condition.

We discovered Superficial Siderosis is one of the rarest conditions in the world with (at the time) approximately one hundred patients in the U.S. However figures may be climbing a little as MRI is now widely available worldwide


slide 11 - Deferiprone/Ferriprox

Jason’s condition was declining rapidly and during a conversation we had, he’d forgotten about a birthday party he’d been to the week before. So I continued my research work and discovered that Dr Levy was working on an experimental basis with a drug called Ferriprox. Known as an iron chelator, the goal is to try to remove the iron products that have found themselves on the surface of the brain and spinal cord. The reason that deferiprone works (which is the generic name) is because it can cross the blood/brain barrier.

Here in the UK we had a fight on our hands to get Jason onto this drug as the NHS was at the time, routinely turning patients with superficial siderosis down. With the help of our local MP and Jason’s own amazing senior neurologist, we got a three month supply initially. This was a difficult time with no organised help or hub of information and Jason was determined to make sure no one was going to have to go through this alone again. In a coffee shop, shortly after an appointment, he decided to set up a charity and the SIlent Bleed was born.

These days, opinion on Ferriprox is divided in the medial community. Some doctors think it helps. Others think its experimental use doesn’t outweigh the side effects and they’d rather focus on easier diagnosis, other treatments or even prevention.

Slide 12 - The latest development

The latest development that is being worked on is a tool that will make the prognosis of SS more accurate (click here for more details)  Measuring the decline in this build-up of iron accurately has proven impossible so a team of scientists are creating a tool which will provide a more accurate reading as to the growth or decline of the iron or Siderosis. 


Slide 13 - Mission statement

Slide 14 - Our main social media is on Facebook

There was some information on Facebook however, I did not like the delivery as it was an unorganised collection of comments so I decided the best place to find those that had SS that were visible would be on Facebook. A Facebook group was created, and I was able to get a collection of information to encourage fellowship and promote the sharing of information ie how individuals cope with SS, I created various groups with the main group private for those with SS as well as representatives of those with SS.


Slide 15 - Other social media

The success of various groups on Facebook proved very successful so I reached out to other networking groups and continue to do so searching for those  in need of direction


slide 16 - The Silent Bleed Website

Amanda and I then created a website so I could organise comments, create topics, highlight successes, and things to avoid, publish articles, emphasise with other sufferers, encourage positivity etc. The Facebook groups were instrumental in getting me on to Ferriprox as it was our only way of finding out who else in the UK was on the drug and where they were being treated. 

(slides 18 - 22) –What we use the money for (discussion)

(slides 23 -  25) - To help you in your fundraising

We have held several events and had many held for us with funds raised going to Dr. Michael Levy's research and towards making the disease known. Here are some of the tools we use to spread our message, how could you use them?


(slides 26-  27) - What event would you choose? (discussion

(slide 28) - Social media URLs


(slide 29) - Reference


(slide 30) - You are now ahead of Superficial Siderosis


If you’d like to get involved, there’s a number of ways that you can do this, first of all you can go to our website, press the donation button and either give us a one off donation or a regular one which helps us with our maintenance costs for the website and also the people who work behind the scenes to keep the Charity going. You can organise an event for yourself and have some fun with your friends. Very recently we had somebody who ran for us so we are enormously grateful and of course you can get involved with our community maybe join our volunteers either running an event or if you have particular skills you can get involved with the Media team. We are always very happy to have a chat, so drop us a line on the website and will get back to you.

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