As a close relative of someone who has E.D. Hypermobility syndrome I can say that your article on the 28th September is timely. It has taken 7 years for my relative to have the full extent of the clinical condition evaluated. The article lacks reference to several important aspects.
The Chiari brain stem descent that typically occurs in the hypermobile group may be associated with hypermobility of the cervical vertebrae with excessive shift of the bodies and facet joint inflammation giving rise to unusual patterns of neuromuscular anomalies--easily mistaken as psychogenic in origin. Microfractures occur in vertebrae that can be focuses of infection or associated with discitis.
The article suggests that a patient should have regular follow up in a multi disciplinary clinic. I suspect not many exist. Provision should be made for setting up one of these in every region. More importantly still, clinical pathways should be established so that non specialist clinicians, when encountering the condition, can refer them to such groups once they are established. In the mean time many Ehlers Danlos patients have to attend a variety of specialist clinics without the benefit of a co-ordinating overview to link them all together--E.G. sufferers may have to attend cardiac, gastro-intestinal, neurological, urological, orthopaedic, autonomic, immunology, infectious diseases clinics over a prolonged period and have themselves to ensure communication between them. I write from experience, even as a surgeon with experience knowing how to access medical services.
Rapid Response:
Re: Ehlers-Danlos syndromes
As a close relative of someone who has E.D. Hypermobility syndrome I can say that your article on the 28th September is timely. It has taken 7 years for my relative to have the full extent of the clinical condition evaluated. The article lacks reference to several important aspects.
The Chiari brain stem descent that typically occurs in the hypermobile group may be associated with hypermobility of the cervical vertebrae with excessive shift of the bodies and facet joint inflammation giving rise to unusual patterns of neuromuscular anomalies--easily mistaken as psychogenic in origin. Microfractures occur in vertebrae that can be focuses of infection or associated with discitis.
The article suggests that a patient should have regular follow up in a multi disciplinary clinic. I suspect not many exist. Provision should be made for setting up one of these in every region. More importantly still, clinical pathways should be established so that non specialist clinicians, when encountering the condition, can refer them to such groups once they are established. In the mean time many Ehlers Danlos patients have to attend a variety of specialist clinics without the benefit of a co-ordinating overview to link them all together--E.G. sufferers may have to attend cardiac, gastro-intestinal, neurological, urological, orthopaedic, autonomic, immunology, infectious diseases clinics over a prolonged period and have themselves to ensure communication between them. I write from experience, even as a surgeon with experience knowing how to access medical services.
Competing interests: No competing interests