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Being diagnosed with Motor Neurone Disease

Being diagnosed with Motor Neurone Disease

Since being diagnosed with Motor Neurone Disease in May 2011, I have done a huge amount of research on the Internet and talked to as many experts as I could find in order to understand the disease that is probably going to kill me. I rapidly reached a stage where my consultant acknowledged that I understood MND better than most GPs, and probably better than a large number of medical postgraduates.

With the huge resources within the Internet, most patients nowadays are able to do this, and many - particularly sufferers of rare diseases - do know more about their condition than their own GPs. Why then, should they not be allowed to make informed decisions about their treatment?

Going back to MND - it's a complicated disease, otherwise doctors would have cracked it by now. It's more than likely that it will require more than one drug to treat. Clinical drug trials normally only test one drug at a time, and therefore it's quite possible that a drug that would be effective in conjunction with another, is rejected during clinical trials as not being of any use in treating MND.

Now imagine a world where MND patients worldwide have access to drugs at this stage of testing - they are proven safe for humans, and possibly known to be efficacious in other neurological diseases, just not for MND specifically. Patients are given the freedom to choose which drugs they think might help them; the process is monitored, and patients and doctors alike can report on their effects. Data is stored centrally, and thus can be analysed to determine the effects of individual drugs and of drug combinations. Ideally this requires some way of objectively measuring the progress of the disease - something which has not been possible in the case of MND in the past. However, huge strides have been made recently in determining biomarkers for MND - measurable characteristics that reflect the progress of the disease. Biomarkers are also being developed or are available for other rare diseases that would benefit from this approach. Once a volume of data has been collected from thousands of patients worldwide, this can then be analysed and used to inform future research into these diseases, and influence investment from pharmaceutical companies.

This is my vision, and the reason I started the campaign for access to medicine. The first step to achieve this vision is to relax the rules on drug testing, which requires a change to the law in the UK. In order to achieve this, we need a lot of support, from politicians, the medical profession, pharmaceutical companies and above all, from the general public. Most people will either suffer from, or know someone who does suffer from a rare disease at some time in their lives. Please show your support by registering interest on my website, and passing the message onto friends and family.


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