“There can be considerable variability in the condition, even within the same family. Some people have joint hypermobility but do not have any other symptoms. Others can be more severely affected. Individuals with EDS-Hypermobility Type (EDS-HT) may have the following features:

• Joint hypermobility with the joints having a wider range of movement than usual.
• Loose, unstable joints that can lead to dislocations and subluxations.
• Joint pain and fatigue.
• Easy bruising.
• Gastrointestinal dysfunction.
• POTS (postural orthostatic tachycardia syndrome) causing fast heart rate, dizziness and fainting.
• Mitral valve prolapse, a heart valve abnormality which is usually only mild in EDS-HT.
• Uterine, rectal or bladder prolapse.
• Urinary dysfunction.
• Varicose veins.”

Is there a difference between EDS-HT and Joint Hypermobility Syndrome?

There has been debate for years if there is actually a difference between these two disorders, as they are often described with the same terms and there is a wide overlap of symptoms as connective tissue impacts the entire body. It’s possible that it’s a group of similar disorders. The current consensus though, which I subscribe to, from those who work most closely with the disorder, is that the two disorders cannot be differentiated. Other names including EDS type III and Benign Joint Hypermobility syndrome have previously been used.

How is it diagnosed?

There are a couple different sets of diagnostic criteria that are currently recognized (I fit under both of them), but one of the most commonly used (and clearly measurable) is the Brighton Criteria. I could spend ages explaining it, but this little graphic is much more effective! I’m not sure who made it, so my apologies for not giving it credit (let me know if it was you, and I will gladly give credit)

EDS is a genetic disorder. The two known inheritance patterns for EDS include autosomal dominant (autosomal means it can affect, and be passed on by, both males and females and the altered gene is the dominant one) and autosomal recessive, and unfortunately, there’s not currently a cure. There are genetic tests that can confirm, but not rule out, several forms of EDS. Unfortunately, there isn’t currently a test that can show EDS-HT. While there isn’t a cure yet, people with the syndrome can be supported

So what’s the prognosis, and what can be done?

The prognosis depends on each individual and what kind of Ehlers-Danlos Syndrome they have. Life expectancy can be very shortened for some with forms such as Vascular EDS due to the possibility of organ and vessel rupture, but most other forms will have normal life-expectancy. There can be what some call “crossovers” though, where, for instance, someone with diagnosed classical EDS or hypermobility EDS (or other types) will have vascular issues, so some recommend regular echocardiograms to guage risk of problems with things like aortic dissection or mitral valve prolapse.

Some individuals will continue to lead “normal” (whatever that is!) lives and have mild symptoms, but others will have more debilitating symptoms, and may require bracing or use of mobility aids or other medical devices. Gentle, non weight-bearing exercise, such as pilates and swimming can be helpful in building muscle strength to better support joints. Joint care is essential, and contact sports are not recommended. Many will benefit from support from professional resources such as pain management, rheumatology, physiotherapy (physical therapy) or occupational therapy.

So, that’s my explanation of EDS in a nutshell. Does anyone have anything to add or want to share something of their experiences? Please add comments for us to share! It’s all about the community! It makes things bearable.