Undiagnosed and rare conditions
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Dr Alan Hakim/Hypermobility Clinic

laurahc__laurahc__ Member Posts: 35 Courageous
Has anyone been seen by Dr Alan Hakim or been referred to the hypermobility clinic in London?

I'm already diagnosed with EDS and was referred to him at the request of my mum (don't ask), however I'm not sure what he's going to be able to offer? I've also heard some mixed reviews on him, so looking for some reassurance I think!


  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @laurahc__, sorry to see that nobody has been able to share any experiences yet. It might be that you're the first on the community to be referred to this clinic, but I'm tagging in @Kaye, @JojoS and @jayne1 in case they can offer any guidance. Wishing you all the best! 
  • JBOccyTherapyJBOccyTherapy Member Posts: 5 Connected
    Alan is one of the worlds leading experts and alongside his consultant work and research he also works on a variety of projects with most of the major EDS / Hypermobility charities. I've worked in tandem with him in the past as well as volunteering at the same charities and speaking at the same conferences so I can be confident when I say that the things he doesn't know about EDS would fit on the back of a postage stamp with room to spare. 
    If you already have a diagnosis then it's likely this won't be the focus of the appointment unless there's any doubt your diagnosis is correct? Chances are you'll end up discussing how you manage your symptoms and if any other referrals are appropriate, e.g. gastro, physiotherapy, cardiology, occupational therapy etc. 
    Not sure what you/your mum is hoping to get out of the appointment but if you have any specific questions I'd be happy to answer them. As well as living with hEDS myself I work with a LOT of EDSers in my Occupational Therapy practice and I work closely with the HMSA :) 
    Best of luck!  Hope it goes well :) 
    Jo Southall
    Independent Occupational Therapist | Public Speaker | Accessible Adventurer
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