I've never been one for keeping journals but I am hoping I'll be good with this blog. I suppose I need a purpose for writing to stay interested so I've decided to use my Ehlers-Danlos Syndrome (EDS) diagnosis as a reason to post regularly. One of my big interests is in current research on EDS and I hope to provide snippets from articles I read over time.
What is Ehlers-Danlos Syndrome?
It's a genetic disorder (born with it) that affects the glue holding our bodies together. Collagen, that molecular glue, is defective in those with EDS so we have more elasticity and less strength in our connective tissue (tendons and ligaments primarily). The most basic symptoms common to every one with EDS are loose (hypermobile) joints, stretchy skin (usually soft), and fragile tissues. There are six main types of EDS.
What type of EDS do I have?
I have hypermobility type. My joints are extra stretchy and can go beyond the normal range of movement. Many of my joints don't like to stay in place; they don't fully dislocate but partially dislocating can be really painful too. I dislocated my left shoulder two winters ago and have recurrent pain there. I have very soft skin, look younger than my age, and I bruise very easily. I'll go into more details over time but a great resource is the Ehlers-Danlos National Foundation (EDNF). I might shorten my type of EDS to HEDS with the H for hypermobility.
Hypermobility type was previously known as type III, so EDSIII is commonly acceptably, and almost anyone with the disorder should know what you're talking about.
ReplyDeleteYes, EDS III is another name for hypermobility type. There used to be something like 12 types but since EDS descriptions were narrowed down to 6 main types, the naming convention has changed. Though a lot of people, including MDs, still use the old names, the medical community associated directly with EDS is trying to change to the new terminology. See http://www.ncbi.nlm.nih.gov/pubmed/9557891 I guess I am just used to using the HEDS acronym from a couple of years on the EDNF boards.
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