The Hypermobility Unit has opened at the St John and St Elizabeth Hospital in London. This evening I attended a 2 hour Seminar hosted by the Unit and found it profoundly informative.
My background knowledge on Hypermobility Syndrome was sketchy so I was grateful to be invited to this promotional event to enhance it. These are certainly children PhysiFun aims to see benefiting from our great exercise programmes in schools. Exercise is vital in this condition and the role of the Physiotherapist (as part of the Multi-disciplinary Team) was highlighted this evening.
The speakers were Professor Rodney Grahame, Dr Hanna Kazkaz and Dr Alan Hakim. They are all at the forefront of research and treatment of this unique group of patients, it was such a priviledge to be able to hear them expand on all elements of this disorder.
It was fascinating to hear Professor Grahame explain the history of how Hypermobility has been understood by the medical community. From 1967 where it was identified as purely a musculoskeletal problem with pain and instability to today where the full picture is much less straightforward and encompasses both structural and autonomic difficulties in the cardiovascular, gastro intestinal, respiratory and urogenital systems. This condition is a new rheumatological disability and is commonly misunderstood by the greater medical community as symptoms dont seem to match physical findings. Unfortunately children can be misdiagnosed with congenital hypotonia, school phobic, dysfunctional family life (with social service involvement), non-accidental injury and Munchausens Syndrome.
The truth is that when all the symptoms are looked at in the right manner and Hypermobility understood - this 'elephant in the room' can be seen very clearly. Patients typically present with dislocations and injuries in their joints, chronic pain, pelvic floor weakness/prolapse, GI dysmotility, autonomic dysfunction and difficulties with day to day tasks including work.
However there is a fine line between the benign and serious nature of this condition. On the benign side is someone like Michael Phelps - a hypermobile person who has been able to use these features to his benefit and great advantage in the pool (flexible ankles make great flippers, extra long arms generate more power per stroke and extra range in shoulders makes butterfly an easier pattern of movement). On the serious side is the young adult cut down in their prime, attending a pain clinic in a wheelchair.
The role a physiotherapist plays in this field has been pivotal for many years. From the pioneers - Anna Edwards-Fowler and Rosemary Keer - to the present day, an evidence base has been established for the hugely beneficial role of exercise for this client group. With programmes focusing on closed kinetic chain exercises eg squat, plie, bridging, wobble board or Wii Fit carried out routinely over a minimum 8 week period, improvement is seen in joint proprioception, balance, muscle strength and quality of life. Those with Hypermobility need to find ways to exercise safely within the full available range of movement to ensure joint strength and stability has the best chance to prevent pain.
For every young adult in a wheelchair I hope that this Hypermobility Unit is the success it sets out to be, and becomes a world class centre as it aspires to be. It is a one-stop shop for everything the patient needs and although private in service base at present it is working towards NHS contracting. There are very few Centres like this in the UK and there are many patients who can benefit! All the best to the team The Hypermobility Unit - St John and St Elizabeth.
If you are concerned about yourself or your child contact
Benign Joint Hypermobility Syndrome - MSK manifestations and management, Dr Hanna Kaskaz, Rheumatology Consultant UCH, The Hypermobility Unit of St John and St Elizabeth
What is Joint Hypermobility Syndrome, why is it important and why do we need a Hypermobility Unit?, Professor Rodney Grahame, Hospital of St John and St Elizabeth, UCH
Systemic Complications in Hypermobility Syndromes, Dr Alan Hakim, Honourary Senior Lecturer in Experimental Medicine and Rheumatology, St Barts and The London School of Medicine and Dentistry, Queen Mary University, Chief Medical Advisor and Trustee, The Hypermobility Association
Amelioration of symptoms by enhancement of proprioception in patients with JHS, Ferrell WR et all, Athritis and Rheumatism 2004;50 (10):3323-8
Easily missed? Joint Hypermobility Syndrome, Ross J, Grahame R, BMJ 29 January 2011, Volume 342: 275 - 277