1. Polly Moyer Polly Moyer United Kingdom says:

    Hi Jon
    I am writing a monthly 'guest' blog for findacure.org.uk about living with rare conditions (an invisible one, MdDS, in my case).  I've just started researching Acromegaly for a future blog and found your article to be invaluable, thank you.  My friend with this insidious condition had a very hard time getting diagnosed and was left with a feeling of shame for being a hypochondriac and a nuisance.  I feel for all those who have had similar experiences when seeking diagnoses for rare conditions - it's horrifically common.  Also he experiences profound mood swings and this has never been addressed as part of his treatment.  I consider this a 'sin of omission' and am grateful to you for highlighting this aspect of Acromegaly so early in your article.
    Meanwhile as you demonstrated, the prevalence of this condition may be much higher than previously thought, due to under-diagnosis.  I suspect that the same will be true for many rare conditions.  So it will be interesting to see how the upsurge in well-informed patient groups -  and the widespread use of the internet for self-diagnosis - will change this.
    Again, many thanks for such an enlightening and thought provoking article and
    I wish you all the best for Rare Diseases Day.  Not something I ever thought I'd celebrate.  But then life can change irrevocably, just from 'disembarking' from an aeroplane.
    Polly (writing for findacure under the banner 'treasure the exceptions')

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