Referat/länkar

Här är diverse länkar och referat.

På vårdinrättningar har vi prenumeration på en del tidskrifter online, utanför sjukhus kostar det ofta en bra slant, men vissa artiklar är gratis i fulltext och jag har i första hand valt dem.

 

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Här ett par fulltext publikationer i Rheumatology från 2001:

Time to take hypermobility seriously (in adults and children). Rodney Grahame

Living with the hypermobility syndrome

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Här artiklar där Rodney Grahame återger sina kritiska synpunkter på hur reumatologer ser på HMS/EDS-HT

British consultant rheumatologists’ perceptions about the hypermobility syndrome: a national survey 2001

I nedanstående artikel från 2008 skriver Rodney Grahame bl a:

Rheumatologists seem to be in a state of denial
about the implications and importance of
hypermobility. Mention hypermobility to an
adult or pediatric rheumatologist and you are
likely to be met with either polite disinterest or
frank indifference. From my point of view there
are five key ideas that need to be debated.
Why is hypermobility largely ignored by the
rheumatology community at large, and, if it
figures at all at major rheumatology meetings,
why is it a fringe activity?

Why is the rubric of hypermobility not
considered to be a topic for serious study when
placing abstracts for a meeting? The interest in
autoimmunity seems to have reached a level at
which patients with negative laboratory tests are
dismissed as being of no interest.

Why has fibromyalgia dominated the chronic
pain scene for nearly two decades, when it has been
established that chronic pain in Ehlers–Danlos
syndrome (EDS; with or without tender points)
is the most serious threat to the hypermobile
patient’s quality of life?

Why is so much effort and money consumed by
is little more than a predisposing factor, and so
little by research into the genetics of the truly
heritable disorders of connective tissue?

Nevertheless, hypermobility-related disorders,
in particular the benign joint hypermobility syndrome
(BJHS; also known as hypermobility syndrome), are among the most
frequently encountered rheumatologic disorders
in clinical practice. Clinical surveys conducted in
places as far apart as London and Santiago indicate
that the prevalence of BJHS far outstrips
that of inflammatory and other arthritides in
community rheumatology clinics, accounting
for up to 45% of routine general rheumatology
referrals.

Furthermore, the clinic prevalence
of BJHS is related to age, sex and ethnicity, being
higher in younger people, in females and in nonwhites.
Using this clinic prevalence of 45% to extrapolate from UK
government statistics on first rheumatology outpatient
clinic attendances in England, relating this to the number of
rheumatology consultants in post in 2003, and
combining this with data gleaned from our own
survey of British rheumatologists’ perceptions
of their workload, we estimate that for every
patient in England with BJHS fortunate enough
to be correctly diagnosed by a rheumatologist,
there are 19 others who are not
, and whose
hypermobility passes unheeded, undiagnosed
and, presumably, untreated. These are truly
shocking statistics, and the impact on patients’
lives could be little short of tragic.

As the prologue to this article testifies, however,
this is not purely a British problem, and my numerous
contacts with people in many different countries
leads me to believe that it affects people
world-wide. Despite the advances that have been
achieved in many other areas of rheumatology
through sustained and dedicated effort over
the past four decades, progress in research into
EDS and BJHS does not seem to have received
equal recognition. Here I describe a number of
probable explanations for this disparity.

Hypermobility is still widely viewed by
rheumatologists as a variant of normality—the
upper end of a Gaussian distribution of normal
range of joint movement in otherwise healthy
individuals, a concept popular in the 1970s. This
view has been challenged by the notion that
BJHS is itself a heritable disorder of connective tissue (HDCT),
albeit with generally less dramatic clinical manifestations than other
HDCTs, such as the classical or vascular types
of EDS (formerly known as EDS types I and II
and EDS type IV, respectively) or Marfan
syndrome, and so is no longer tenable. Many
authorities in the field go further, and maintain
that BJHS is indistinguishable from (if not
actually identical to) the hypermobile type of
EDS (formerly known as EDS type III). This
does not, of course, exclude the possibility that
‘community-derived’ hypermobility—as seen
in performing artists (as well as others)—might
result from a variety of nonpathogenic polymorphisms,
as a consequence of minor variations in extracellular matrix genes encoding,
for example, collagens, elastins, fibrillins or
tenascins. Other polymorphisms might be
in different, more-interactive regions of the
protein, rendering them pathological.

Hypermobility: an important but often
neglected area within rheumatology

Benign joint hypermobility in childhood
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Här bra översikt med fina bilder:

Benign joint hypermobility syndrome: evaluation, diagnosis, and management från J Am Osteopath Assoc. 2006 Sep;106(9):531-6. Review.
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sök  på  www.uptodate.com hypermobility syndrome.

18 sidor Lång artikel med många färgbilder ”Clinical manifestations and treatment of the hypermobility syndrome”  kräver abonnemang för fulltext men studera gärna referenserna.

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Här Rodney Grahame himself från Sep 30  2004

Joint hypermobility syndrome: a complex constellation of symptoms

 

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Denna holländska studie visade att i övrigt friska barn med hypermobilitet OCH ledvärk också hade besvär från andra delar av kroppen- vilket tyder på att HMS är en systemsjukdom som inte bara drabbar lederna.
Pediatric Generalized Joint Hypermobility With and Without Musculoskeletal Complaints: A Localized or systemic disorder?

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