Dr Alan Hakim 2017-03-10 Person 5 5 0

Like many patients who suspect EDS, I have had some terrible experiences with primary and secondary health care professionals. Years of soft tissue injuries, disc problems, autonomic dysfunction and chronic, debilitating pain, which have been largely ignored. Even when I managed to get a referral to an NHS Rheumatologist, and arrived armed with prints outs from the HMSA and EDS websites, they were dismissed. I was literally at my wits-end, not least because all three of my now grown children, have the same problems; it was this that led me to Dr Hakim. There was an awful lot to fit in the one hour appointment, and this was a challenge, but Dr Hakim did his best to read the (copious) notes I took along with me, detailing my own and family history. He could see instantly how the pieces of the jigsaw fitted together, and despite my huge levels of anxiety about the appointment, I can honestly say, I only wish I had seen him years ago. Dr Hakim diagnosed hEDS, with a crossover into Classical. I felt my experiences were validated at last. Dr Hakim has written a report detailing the diagnosis and most helpfully, which elements of my symptoms would be related to EDS and which would likely not. He also provided recommendations for referrals through the NHS, as well as a private referral to the Physiotherapy team at St John and St Elizabeth, which have been most useful, and they are now trickling through. This is so important in terms of regaining as much functioning as possible, and also, to prevent/manage issues down the line. In terms of suggestions, the only thing I would offer is added time. Perhaps an extended appointment, or time allocated for a follow up? Dr Hakim is literally the only health professional I have ever met with knowledge of EDS and as it's multi-systemic, like others suffers, there are a range of issues; having the ability to discuss these with someone in the know, after a lifetime of dismissal, is just marvellous. That said, I do have an open appointment, which is fabulous, and I will no doubt, make an appointment again, once progress has been made with the referrals, and I have a full account of any further concerns or questions I might have. In short, Dr Hakim is very personable, approachable and knowledgable. We need more like him, and I personally think we should clone him! :-) Through the HMSA and EDS social media based support groups, I frequently recommend that others who suspect HMSD/EDS and are struggling with their health care, see him. He is marvellous and I know my thoughts echo that of others in the EDS community who have seen him. My only additional wish, would be a dedicated follow up, or additional time. My past experiences mean I worry terribly when dealing with health professions, but Dr Hakim put me at ease. He listened, he understood and after 46 years of issues, he confirmed where others have ignored; my issues are linked and real. We need more experts in this vastly misdiagnosed and misunderstood field. I would and do, highly recommend Dr Hakim.