Dr Alan Hakim
26th November 2020
For decades, I have lived with a number of increasing musculoskeletal problems plus a raft of other conditions, and although I had asked the question a number of times, no explanation was ever given as to what was going on.
However, at the end of last year upon the discovery of aortic aneurysms (large enough to require major surgeries) my GP told me that after speaking with a local rheumatologist, that I had probably either Marfan Syndrome or one of the Ehlers-Danlos Syndromes (both connective tissue disorders). Clearly, I wanted to understand better, so looked into what these conditions were and realised that they were genetically inheritable. That was a turning point for me, as I have both a daughter and grandson who could be at risk, and if the aneurysms were linked, I needed to know for certain, to keep them as safe as possible.
Unfortunately, and as I found out is all too common, in-depth knowledge, or much knowledge at all, is severely lacking within the general medical community. Even within Rheumatology as was apparent with the NHS consultant, as he said that there was no point in wasting my time going to see him as neither condition was curable and there was ‘nothing that could be done’. Which I’ve since learnt is not the case at all. There is a great deal that can be done to mitigate the symptoms and improve quality of life, let alone be potentially life-saving in the case of someone being at risk of developing aortic aneurysms.
And this is where Dr Hakim comes in. I had heard about him from others who had been diagnosed with Ehlers-Danlos Syndrome, and who like me, had gone for years without an explanation for all of their many symptoms. And like me, had experienced enormous difficulty in finding anyone knowledgeable about this condition and could find no explanation, often being treated with a dismissive manner by the various medical professionals I had seen throughout my life. The net result of that meant that I stopped raising any new or worsening issues with my GP and just had to accept that I had a wonky body, put up with the pain and that was that.
A number of people I ended up meeting through EDS UK Support group (patients and parents of adult children) couldn’t sing Dr Hakim’s praises high enough, so decided that I would request a referral to him from my GP. It was the best thing I ever did. Not only did I get a formal diagnosis of Ehlers-Danlos Syndrome, which explains so much but also has helped in being able to confirm to my surgeons the presence of a connective tissue disorder. This in turn has informed them as to how best to proceed in dealing with these aneurysms which will therefore minimise future problems.
I can thoroughly recommend Dr Hakim to anyone, who like me, has gone around the houses so many times without ever getting any answers. He has been able to finally give me answers no-one else ever has. He has a deep, genuine concern for his patients and that they get the best care possible. Plus he listens, really listens and will go that extra mile so you can get the help you need.