A unique meeting of minds in the fight against Superficial Siderosis
One warm September day in London, a room in the UCL Stroke Research Centre, some of the best informed Superficial Siderosis clinicians in the world and representatives of Silent Bleed. The ideal place to share up to the minute research, new ideas and inspired exchanges.
Find out more about what was said at this ground-breaking meeting and what it means for people affected by Superficial Siderosis.
From the UK, a warm welcome and plenty of fresh research information from Professor David Werring and his research associate, Dr Duncan Wilson. From the other end of the table, Dr Peter Cowley, a respected clinical radiologist, gave his findings about the relationship between damage to the dura and Superficial Siderosis. At the centre of the table, Dr Michael Levy, over from Baltimore and on his way to a conference with his research associate, dropped in to talk about his history of treating the disease, his approach to diagnosis with MRI and how his ongoing trial with Ferriprox is going. And Senior Pharmacist Sheeta Sumaria was there with an interest in the pharmacutical point of view.
A couple of members of the Silent Bleed team were also present. Highlighting the charity’s aims and objectives, Jason Roberts and Amanda Fearn put forward their vision for better international clinical collaboration and fundraising to find a cure. Representing Superficial Siderosis sufferers and their friends, family and carers, Janice Toovey was there to voice what everyday life is like for those profoundly affected by this cruel disease, along with her son Paul who presented a cheque on behalf of the Silent Bleed.
The end of an interesting and productive morning: Dr Levy stops for a quick photo with Jason Roberts and Paul Toovey
What we learned
The most exciting thing about the meeting was the sharing of information. As each doctor presented their research, questions were raised, conclusions questioned, new lines of enquiry opened. It was a fast fire discussion: ironic considering the disease’s usual slow onset.
In the real world, what will the issues raised at this ground-breaking meeting mean for Superficial Siderosis sufferers? These were some of the points raised:
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There needs to be a move towards better diagnosis. Although it remains a very, very rare disease, there is no doubt that there are patients out there who are suffering from the condition who remain undiagnosed.
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The need to get more research published and into the eye of neurologists everywhere – so that those presenting with symptoms get an MRI, correct diagnosis and the treatment they deserve.
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Is there a more effective way of looking at MRI scans other than by eye? In order assess the possible reduction of harmful blood product deposits on the brain and spinal column, there may be a better way of measuring and comparing results over a period of time.
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Why do a small number of people with cerebrospinal bleeds go on to develop the condition while others don’t? Answering this question may lead to better diagnosis, prevention and even a cure.
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In cases where the deposits have been depleted by treatment with Ferriprox (and Dr Levy showed us research to support this), is it possible to recover from the damage already done? Is there other physiology or other harmful chemicals at play that we can’t yet assess?
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There is a clear link between bleeding from damage to the dura around the spinal column and Superficial Siderosis. As repairing this damage can be unbelievably difficult and risky to the patient, there was some discussion about whether it’s best to use Ferriprox mop up the harmful deposits as soon as possible, or wait for the bleed to be cleared up first.
One thing is clear: we heard first hand just how passionate these physicians are about answering the questions posed by Superficial Siderosis and how much they want to make a difference to the lives of those who have it.
What your money does
Every little counts. Every fun run, every cake sale, every wristband sold goes towards this: putting cash into the hands of doctors who are determinted to unlock the secrets of Superficial Siderosis.
This is Paul Toovey - our resident expert on getting around London by public transport in a chair - presenting a cheque to Professor David Werring - the man with a rich background in clinical neurosurgery and research, so many inspired ideas and for our meeting, a welcoming plate of chunky choc chip cookies.
In the end it’s a numbers game
Prion disease, for example, is just as rare but receives greater publicity and more funding for research. Why is this? Why isn’t Superficial Siderosis taken more seriously? Is it because it’s not as well known?
As a result, we are more determined to:
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raise awareness so that clinicians and those who hold the purse strings take the condition more seriously
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raise money ourselves so that we can do what we can to support the research
But we need your help too:
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We know from comments on the Facebook page that there are doctors out there in different areas of the world who have a clinical interest in this rare disease. We’d like to establish an international forum. If you have any information, please drop us a line.
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There’s nothing like having fun and raising money while you’re doing it. From crazy coloured fun runs to delicious cake sales, we’ve organised some happy events over the past couple of years. What do you fancy doing? Get in touch, we’ll give you some ideas and all the help we can, including promotion
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Diagnosis. Have you had any interesting discussions with your physician? Is there anything you would like to share with others? We’d be happy to hear from you
Where next?
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As a result of the meeting, we know that there is going to be more collaborative work across the Atlantic between Dr Michael Levy and Prof David Werring
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And we’re looking into publishing a set of information cards for Superficial Siderosis sufferers, their friends, family and carers and their physicians. So that people in our community get the information they need, as well as the diagnosis, treatment and support they deserve
We’re all in this together.
AJF