Top Ehlers-Danlos Syndrome Specialist Retires

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!