Top Ehlers-Danlos Syndrome Specialist Retires

By 2010 I’d seen a string of consultants over the years, but none had been able to tell me what was wrong.   They’d all been appointments of around 15 minutes, a quick look at my spinal movement, a couple of questions , a shrug of their shoulders and a dismissal.  I left each appointment feeling lost and disappointed.

A physiotherapist then mentioned I was very hypermobile, which then put me on a path of research into what that meant, the implications and I then came across the condition Ehlers-Danlos Syndrome which seemed to fit all my symptoms.  I also found that one of the top specialists in the condition, Professor Rodney Grahame, was based at the University College Hospital London.

I then had quite a fight to get the referral, having to go through the PCT and Rheumatology department at my local hospital – but finally I was informed they were willing to refer me for a second opinion and I had the funding for it.

It took about six months until I saw Professor Grahame, in January 2011.  I knew he was different when he began to put together a detailed overview from my birth to the current day.  I was with him for over an hour – and he was very thorough and polite.  He explained what was wrong with me, and some of the things I could try – including referrals to other specialists.  I felt listened to, respected and finally had the answers I had been seeking for so long.  He also followed my appointment up with a very detailed report that helped me secure further support from other sources.

I saw him again eighteen months later for a follow-up, where again he was very helpful, and enabled me to have further testing within weeks, that I’d been asking for locally for the past two years.

Sadly, Professor Grahame retired this year and it’s a massive setback for the Ehlers-Danlos Syndrome sufferers in the UK.  There is a shocking lack of specialists and clinics in the UK – and Professor Grahame has been unfailing in his research and support.  He changed the lives of so many families by finally being able to give answers to people sometimes after decades of uncertainty.  He brought a particular kindness and expertise that many others lack.

He will be sorely missed at the UCHL, but I hope he enjoys his retirement!

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6 Comments

  1. Surely he’s trained other specialists? Can he refer you to one of his proteges?

    Reply
    • There is a massive lack of EDS specialists in the country, it’s pretty much at critical levels.

      The Royal National Orthopaedic Hospital has closed their Hypermobility clinic until the new year at least due to over-subscription. The other consultant based at UCHL doesn’t have a great reputation, and has a massive waiting list.

      The other main specialist in the north of the country also retired, but the hospital refused to let him train someone else.

      So, it’s pretty damn bad. Although Ireland doesn’t have any at all, so it could be worse.

      Reply
      • I live in the US. What do you mean by “closed due to over-subscription”? They had more patients than they could treat? That’s terrible that there aren’t more specialists nearby! :-(

        Reply
        • Yes, absolutely. There were two clinics – one with one consultant (but used to have two – the second being Professor Grahame). The remaining consultant there doesn’t have a great reputation. Then a second that has two or maybe three consultants based there at Royal National Orthopaedic – which is the one that has closed until next year at least.

          Every patient in England is having to head to these two clinics, one of which has now closed. It’s likely those in Wales are having to use this clinic too, and maybe people from Scotland as well, but I’m not sure.

          Of course some people are lucky enough to find a local consultant who may have bothered to research the condition – but that’s very rare!

          It is a massive issue, and until the condition gets more recognition/funding – will keep happening.

          Reply
    • Yes, Dr A Hakim is fantastic and has worked closely with Prof Grahame and is equally as knowledgeable, kind and helpful. In fact all of his team are fantastic

      Reply
      • Ever so sorry, your comment got marked as spam for some reason. Just rescued it!

        I haven’t met Dr Hakim, but I read on a forum numerous people unhappy with their care. So it worried me – but of course there are probably bad stories about every doctor somewhere. In fact the day before I saw Prof Grahame I read someone had a bad experience and got really worried – and he was lovely! So you can’t please everyone.

        Reply

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