is there any research out there on LS especially in UK

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Was diagnosed with LS about 7 years ago and have the time as now retired (ex NHS Senior manager) to help with any research or contribute towards a trial. I can't find any relevant trials in UK. I would especially like this to be added to the 100,000 genome project if there is a clinincian out there wanting to do this. I just feel that it should not be a big problem to find a solution to LS that probably affects far more people than those diagnosed

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  • Posted

    Hi anneS18, one of the 'hats' I wear is an NHS trained Patient Leader.  Don't get me wrong, as the NHS does amazing things for a multitude of people everyday!  However, I see the other side - people with mental health issues, people 'lumped' under the umbrella term of Medically Unexplained Symptoms [MUS] who have to endure real pain and other severe limitations on a daily basis.  Here we have the example of LS - I am not surprised there are no medical trials.  Being a bit more controversial, you have to question why it is that only certain medical conditions attract research funding, while many others, receive a very limited budget to alleviate symptoms that are present in other disease conditions anyway.

    I am in no way saying the NHS is to 'blame' - only the way it has been historically organised and funded does not meet the needs of everyone, and many conditions receive relatively menial attention in terms of both funding and service provision.  Another example is Chronic Fatigue Syndrome / ME - despite the huge proportion of the population who suffer symptoms [e.g. excessive tiredness, etc] associated with these conditions there are no NHS specialist who deal with these and all other MUS conditions.

    Much of the research conducted in the UK is organised by university research departments attached to hospitals, and universities will only bid for funding from the same 'limited pot' for a relatively limited set of conditions - the same conditions [largely] that have been historically favoured by the NHS anyway!

    So in terms of what you want to achieve, I would suggest you continue your own research.  Try to find out what research the NHS puts out to tender, and how it is that this process can be influenced along the lines of a broader spectrum of disease conditions.  How are clinical trials organised, and how can this process be influences.  There are the likes of NIhCE who are hugely influential, and who do get public involvement and representation.  Perhaps there is a route in there for what you are trying to achieve?! 

    By all means continue the discussion, and I hope you get other respondents on here from the UK.  As, many of the wonderful ladies on this Lichen Sclerosis forum live in the US and may not want to influence the UK health system anyway. - Good Luck - W.D.

    • Posted

      Many thanks for those comments. I will continue to find out as much as I can. Never giving up and not accepting No as an answer clearly defines me. I am convinced as with many other medical conditions there are several causes of LS and I am therefore keen to get LS into the Genomics England radar at some point but possibly not this round!? Will keep you all in touch. Anne
    • Posted

      Well many thnaks for that. That will keep me going for a while and I will pass on to two friends that suffer from lupus and vasculitis as they will be interested. Strangely my sister suffered from the latter too but she died a few years ago.


    • Posted

      It is quite clear to see that many conditions [not just LS] are linked to 'our modern way of life', and in particular, the dietary content that are very common now across much of the world.

      It is well-worth following the Women's Health / Lichen Sclerosus forums as contributors raise methods of dealing with the condition that most people simply would not imagine trying.  Things such as Borax, which used to be commonly used in the relief of ailments, is one example of this.

      If the LS you have is not 100% under control I would certainly recommend being a regular follower of these forums ..... Good Luck - W.D.


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