There wasn’t a lot of information available about Ehlers-Danlos Syndromes (EDS) when I was first diagnosed with Marfan’s Syndrome at the age of 15.
I remember walking into the hospital parking lot with a lot to think about. Until that age I knew that I wasn’t healthy, but I didn’t have a name for the lifetime of symptoms and hospital visits.
What implications would this diagnosis have for the rest of my life? Where would I be in ten years?
I’m alive today, past the ten-year stretch living with Marfan and Ehlers-Danlos. To be honest, I didn’t imagine I’d reach this point. I didn’t think that I’d be here at all, still writing and playing cards.
Being diagnosed was life-changing – and also life-saving.
Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders. If you experience lifelong symptoms of joint pain and discomfort, or can describe yourself as hyper-mobile, pay attention to the following post.
Here are 4 things bridge players should know about EDS.
1. Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders.
Ehlers-Danlos Syndromes are genetic, degenerative, and far more common than people might have thought in the past.
The conditions are known to affect the body’s connective tissue. Connective tissues are found everywhere in the body, including throughout joints, muscles, and skin
2. A bridge player you know might have Ehlers-Danlos.
The most common variety of Ehlers-Danlos Syndromes can affect as much as 1 in every 5, 000 people.
This makes it likely that someone you know might have EDS.
Symptoms of Ehlers-Danlos can be vast, and different for almost every individual. For me, it took years to find this out. For you or someone you know, it doesn’t have to.
General symptoms can include joint pain and inflammation, hyper-mobility, bruising, and arterial weakness.
3. Hyper mobile EDS is one of the most common forms.
Hyper mobile EDS is estimated to be the most common form of the connective tissue groups.
People with its hyper-mobile form can add “stretchy” skin to their list of symptoms. Joints and tendons also stretch “further” for people who have this form of the condition.
What does this mean for people who have it?
Spontaneous dislocations and the potential of aggravated conditions like arthritis.
Did you see the part about spontaneous dislocations?
Yup, it really happens.
4. Famous people with EDS include…
I’m relieved to say that more information is available about EDS and its related symptoms today than when I was first diagnosed. Awareness helps, and awareness means that doctors can diagnose and treat the condition easier.
Which famous people have been diagnosed with EDS?
Just some of them include actresses Jameela Jamil, Lena Dunham, and Cherylee Houston. Violinist Paganini is today thought to have had EDS, too.
If you have a story to tell about EDS yourself, now is the best time to talk about it. Diagnosis and awareness saves lives.
If you suspect that you (or someone you know) could have Ehlers-Danlos, start with online resources for EDS. A doctor’s appointment is a good idea from that point on, together with regular check-ins to monitor your health.
Remember to take relevant EDS resources to your doctor’s appointment. Accurate resources can be scarce, and many medical professionals appreciate the added help.
Follow the links below to find reliable and updated resources for EDS.
- The Mighty: EDS Support Resources
The EDS Society: Community Resources
Could you know any bridge players with Ehlers-Danlos Syndromes?