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) leaflet together.
At this time we have found 700 neurologists in 165 countries that 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, (however if you have a neurologist that is uninformed with regard to SS, then please do contact us and we will ensure they are informed as soon as possible or (if the situation is not that urgent) they will be added to a mailing list for when we have found enough neurologists ( and have raised the funds) to send an email campaign.
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 wish to present are;
Pathophysiology
Common Causes
Clinical Presentation
Differential Diagnosis
Management Strategies
Surgical Intervention
Prognosis
Ongoing Research
Global Support and Collaboration
It was around 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).Fortunately my friend Amanda could see the trouble I was going through and 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 so no one was left in the dark again.During this very exciting venture of making this very rare disease known there are many languages that we will need to create the leaflet for, In order for this to be we will need funds. At this time The Silent Bleed has invested over £2000 in this venture so far thanks to your donations however we will need much more to complete this and this is where you can help, how can you help?
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.