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Find me a Neurologist - update

 

First I would like to give a big thanks to everyone who has contributed to this venture both economically and with hard work, making it possible for TSB (The Silent Bleed) to recruit a VA for research so this information can be found and made available, secondly, I would like to give my thanks to Professor Werring and Natallia Kharytaniuk at University College London Hospitals NHS Foundation Trust for helping us put the Superficial Siderosis (SS) Medical Directive together. At this time we have found almost 700 neurologists in 165 countries that most likely need to be informed with regards to SS, providing a full understanding of the disease so that it can be correctly diagnosed. At this time we are gathering information on the location of neurologists, ( if you have a neurologist that is informed with regard to SS (should you wish to make them in informed, please copy the above link, please do contact us  telling us they are informed as we can pass individuals to them).

 

Neurologists that may not know of SS will be added to a mailing list for when we have found enough neurologists (and have raised the funds) to send an email campaign  to at least one neurologist within 100 miles of the next.

 

This gathering of information is merely the beginning of contacting as many neurologists as we can, providing them Key Characteristics to identify the disease, the characteristics that we will be presenting are;

 

Pathophysiology

Common Causes

Clinical Presentation

Differential Diagnosis

Management Strategies

Surgical Intervention

Prognosis

Ongoing Research

Global Support and Collaboration

 

The directive can be found here for you to pass on to your clinicians

 

It was 2013 when I first found out that I had the disease and all that was available was a white paper from  the U.S, I sat in the cafe of Frimley Park Hospital shaking, weeping very concerned as to my future and what tomorrow had in store for me, my body was changing every day in the way of mobility and the slightest overload of information made me exhausted to the point of wanting to sleep right where I was - wherever I was (and I did, waking up several stops ahead of where I should’ve got off the train amongst other occasions).

 

Fortunately my friend Amanda could see the trouble I was going through in 2013, we started the search for information so that we could find out exactly what we were dealing with. To cut a long story short, in a few years we created a charity for this condition with my goal of informing every neurologist of SS so no one was left in the dark again.

 

During this exciting venture of making this very rare disease known, there are many languages that we will need to create the directive and cover letter for, In order for this to happen we will need funds. At this time The Silent Bleed has invested over £6000 in this venture thanks to your donations  however we will need more to complete this and this is where you can help, how can you help?

Wright

Do you know of a Neurologist who needs informing?

Would you like to host a fundraising event?

Can you contribute towards the cause either with a one off donation or a small monthly direct debit/standing order? 

 

Even if the funds run out, I will not stop this mission. Please join and help me in making this disease known worldwide so it can be treated accordingly.

 

 Jason Roberts

 

 

Please click here to make a donation, thank you. 

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ULCH approved medical Directives:

we hope to have the doctorate available for the public soon, we are making some security checks on the document before it is released to the public (if you wish to be kept updated with regards to this, please add yourself to our mailing list here)

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