Dr. Rodney Grahame led the first plenary session on Friday morning. He first noted that in 2010, the hypermobile type and joint hypermobility syndrome (JHS) are finally being recognized as the same syndrome. A number of journal articles have made it clear that these two syndromes are very difficult to tell apart. He also mentioned that he is dismayed at the misdiagnoses by rheumatologists for EDS. Dr. Grahame stated that there is an atypical nature of pain in EDS, which causes the misdiagnoses. The G.I. involvement, as well is the atypical nature of pain, lead to symptoms of not being believed, or being ascribed to a psychological cause. He emphasized that to be told a genuine symptom of a recognized disease is unreal if the "most unkind cut of all." However, Dr. Grahame did note that there is a movement with in the specialty of rheumatology to recognize EDS, in part based on his tireless work and the work of many of the other speakers here.
Dr. Grahame then began to speak on this topic of "what should we call our syndrome?". He first spoke briefly about the problem with an eponymous disease. For EDS, the funny thing is that the men it was named after, Ehlers and Danlos, were not the first people to recognize the disorder. The first report of EDS was actually from Russia by An Chernogubov. Francis Parkes-Weber suggested the name of Ehlers-Danlos syndrome in 1938 (without doing his homework, apparently).
Dr. Grahame talked a bit about hypermobile EDS versus joint hypermobility syndrome. Dr. Grahame emhasized that JHS is only one aspect of the disorder. However, they have been seen as two different disorders for many years. Finally, in a 2009 article, Bradley Tinkle, et al., came to the conclusion that EDS hypermobile type and HMS are indistinguishable. The authors of this article were from three different continents. It was of their collective opinion that they would be helping patients by uniting the two different disorders.
Dr. Grahame did note the problems of the union of HMS into EDS. If a patient is diagnosed with EDS, the diagnosing physician may be accused of over-medicalizing symptoms and causing unnecessary anxiety. However if the patient is diagnosed with a HMS/JHS, the diagnosing physician is telling the patient that the problem is in their joints only, which is not true. The diagnosis of HMS/JHS also trivializes the syndrome and can have a detrimental effect on disability applications.
So getting back to the main question, a new name should be succinct, meaningful, and reveal the core characteristics of the syndrome. First, a keyword is ELASTICITY. Another keyword is DNA. Finally, this is a multi-systemic SYNDROME. So, for short, how about EDS?
Dr. Grahame then began to speak on this topic of "what should we call our syndrome?". He first spoke briefly about the problem with an eponymous disease. For EDS, the funny thing is that the men it was named after, Ehlers and Danlos, were not the first people to recognize the disorder. The first report of EDS was actually from Russia by An Chernogubov. Francis Parkes-Weber suggested the name of Ehlers-Danlos syndrome in 1938 (without doing his homework, apparently).
Dr. Grahame talked a bit about hypermobile EDS versus joint hypermobility syndrome. Dr. Grahame emhasized that JHS is only one aspect of the disorder. However, they have been seen as two different disorders for many years. Finally, in a 2009 article, Bradley Tinkle, et al., came to the conclusion that EDS hypermobile type and HMS are indistinguishable. The authors of this article were from three different continents. It was of their collective opinion that they would be helping patients by uniting the two different disorders.
Dr. Grahame did note the problems of the union of HMS into EDS. If a patient is diagnosed with EDS, the diagnosing physician may be accused of over-medicalizing symptoms and causing unnecessary anxiety. However if the patient is diagnosed with a HMS/JHS, the diagnosing physician is telling the patient that the problem is in their joints only, which is not true. The diagnosis of HMS/JHS also trivializes the syndrome and can have a detrimental effect on disability applications.
So getting back to the main question, a new name should be succinct, meaningful, and reveal the core characteristics of the syndrome. First, a keyword is ELASTICITY. Another keyword is DNA. Finally, this is a multi-systemic SYNDROME. So, for short, how about EDS?
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