Tag Archives: genetics

Heads up change is coming May 2016

Update February 7, 2017: Via The Ehlers-Danlos Society (aka “The EDS”) on Facebook the full new EDS nosology will be published on March 15, 2017. Meanwhile, some preliminary documents have been shared ahead of time, including one that talks about … Continue reading

Posted in About EDS | Tagged , , , , , , , , , | 8 Comments

Birds of a Feather

Birds of a feather flock together. And although we like to call ourselves medical “zebras”, for the purposes of this discussion I’m calling us birds to honor the age-old adage. Because we definitely flock and hang together whether we realize … Continue reading

Posted in About EDS | Tagged , , , , , , , , , , , , , , , , , | 4 Comments

Calling All Geneticists

Wow, who would have thunk it? Careful what you ask for –  you may get it: we seem to be raising enough collective awareness finally through regular and social media that more people are suspecting they may have Ehlers-Danlos Syndrome … Continue reading

Posted in About EDS | Tagged , , , , , , , , , , , , , , , | Leave a comment

On Variable Expression

From the online Genetics Home Reference, variable expression is defined as: “Variation in clinical features (type and severity) of a genetic disorder between individuals with the same gene alteration, even within the same family” [italics mine, JG] Definition from: GeneReviews from … Continue reading

Posted in About EDS | Tagged , , , , , , , , , , , , , , | Leave a comment

Diagnosing Ehlers-Danlos Syndrome

Boy is this a hot topic! Naturally, since it’s so hard to even get a doctor or doctors to listen to us and recognize our vast collections of symptoms (see last) as a possible systemic condition, we naturally want an easy … Continue reading

Posted in About EDS | Tagged , , , , , , , , , , , , , , , | Leave a comment