So you already know that your flexible/double jointed/prone to dislocations? Some people may have all of this but generally in day to day life not be in pain & are able to cope with life.

Then there are the others, us. The ones that find day to day life difficult sometimes & are in constant pain. I am sure probably ALL of you at some point have been told by a doctor that EDS/JHS cannot cause you that much pain. WHATEVER. Lets swap bodies for a day & then you tell me why I am in pain.

I came across the 2 main things used for diagnosis purposes on the Internet whilst I was doing my research.

1. The Beighton Scoring System.

This has been used for over 30 years to help with diagnosis, however it’s original use wasn’t for clinical purposes but instead for research purposes. Don’t get me wrong it has proved to be very helpful in the JHS world & doctors still use it as part of it. However, this system only concentrates on certain parts of the body meaning other parts that are Hypermobile may be missed. Through research we now know that JHS/EDS includes a lot more symptoms than just the hypermobility aspect eg. Skin, POTS etc. for this reason the Beighton Scoring System is now used alongside another scoring system.

2. The Brighton Criteria.

The criteria consists of hypermobility as well as all of the other symptoms that can be found in this syndrome. The criteria are shown below:

MAJOR CRITERIA
A score of 4/9 in the Beighton Score currently or historically.
Arthralgia for more than 3 months in 4 or more joints.

MINOR CRITERIA
A Beighton score of 1 2 3/9
Arthralgia for more than 3months in upto 3joints or 3months of back pain.
Dislocation/Subluxation in more than 1joint or 1joint on more than 1 occasion.
Soft tissue Rheumatism
Abnormal skin: Stria, stretch marks
Eye problems
Varicose veins, hernia, rectal prolapse

For a full view of the criteria please visit:
http://www.hypermobility.org

The criteria are a great way for self-diagnosis, if you fit into this category it is definitely worth seeing a doctor. Of course there are lots of other things that might be YOUR problem but at least you have something to take to your doctor & they can decide whether they think you are right or whether there is another condition that may explain your symptoms.

Unfortunately at the moment there is not a definitive test that 100% confirms a case of EDS-HT, diagnosis is based on the above criteria & history. The research into the EDS family does suggest that a gene will be found to be the cause of the syndrome & genetic testing will be available in the future hopefully!

It is thought to be a hereditary condition so it is quite likely that someone in your family will have similar symptoms to you &/or have BJHS.image