31 random facts about Ehlers-Danlos Syndrome (prounounced AY-lerz DAN-lowz), also known as EDS. It is a group of genetic disorders that are actually NOT rare – only rare to be properly diagnosed by a doctor who is knowledgeable about EDS. Every person has a different set of common symptoms, no 2 are exactly alike, because it is caused by faulty collagen – the glue that holds our bodies together. Spreading awareness is the key to helping more people get properly diagnosed.
1. Inherited genetic disorders
Because each EDSer is different, members of the same family can have greatly varying symptoms. One may live a relatively healthy life with almost no symptoms, while their family member uses a wheelchair and feeding tube.
2. There’s no such thing as “double-jointed”.
Hypermobile joints cause chronic, painful dislocations and subluxations. As we age into our 20s and 30s, this can also cause arthritis, and we become more stiff and less flexible.
3. Connecting the dots…
Until someone learns about EDS, it can be hard for them to connect the dots between their migraines, digestive problems, blood pressure, back pain, and heart problems all being about connective tissue.
4. Born this way.
5. Pain from 0 to 10 in .5 seconds.
Expending energy, just moving the wrong way, or sometimes even the weather can sometimes leave us in days of pain. Please keep inviting us, because we will go when we can! We want to!
6. Handle With Care
This is especially true with Vascular Ehlers-Danlos Syndrome, also known as VEDS.
7. Inflammation sucks.
Actual heart attacks are more likely with VEDS.
8. EDS and Insomnia
These adrenaline issues are also why we are more prone to anxiety and panic attacks. We are also often up with painsomnia – when we are in too much pain to sleep.
Postural Orthostatic Tachycardia Syndrome, also known as POTS, is very common for those of us with EDS. We often have blood pressure that is too high or too low, and can have dizzy fainting-like spells. Showers and hot tubs can be dangerous for us.
10. Velvety soft skin.
Often described as having the skin of a newborn and joints of an 80 year old.
11. Neck pain.
Having a gentle massage therapist who is knowledgeable about EDS can be crucial. Just another reason we need to spread awareness!
12. EDS and Pregnancy
Younger women with EDS tend to have less problems with pregnancy, but there is still a 50% risk that the child will have EDS, as well. It is a very personal and difficult choice to make, especially in the late 20s and older.
13. Vascular Ehlers-Danlos Syndrome (VEDS) kills.
Find out more information about VEDS from the Ehlers-Danlos National Foundation http://ednf.org/vascular-veds-emergency-information
There are several different types of EDS, and there can be different types within the same family through mutation. But the symptoms can vary so widely from person to person, that genetic testing is the best way to know for sure.
15. Center for Clinical Care & Research (FINALLY!)
Ehlers-Danlos National Foundation has partnered with the Greater Baltimore Medical Center (GBMC) to establish the EDNF Center for Clinical Care & Research at GBMC’s Harvey Institute for Human Genetics. Open August 2014.
16. EDS & Anesthetics
We can have low absorption of many things – pain killers, vitamins and minerals, and yes – anesthetics.
Also to stretch our bodies.
18. Forgot what I was saying…
It’s on the tip of my tongue! Why am I suddenly so tired and can’t remember anything? Argh.
19. Chronic Fatigue
Chronic Fatigue Syndrome, also known as CFS, affects people will all sorts of chronic illness. Those of us with chronic fatigue are also known as #Spoonies. See Christine Miserandino’s Spoon Theory for more info on that! http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/
20. Fingers that sometimes won’t fing.
21. Why the Zebra?
22. TMJ can be worse than TMI.
Brushing teeth can suck when your jaw gets stuck.
23. Invisible Illness (for some)
We may not need any assistance one day, and a wheelchair the next, and then just a cane the day after that. Cleaning the house can mean having to rest in bed for a week. Again, see: The Spoon Theory http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/
24. Digestive problems… gut instinct.
We never know when or where we will be in sudden excruciating pain.
26. Testing, testing, 1 2 3…
This is why raising awareness of common symptoms of Ehlers-Danlos Syndrome is SO important. You don’t know whose life you could change for the better, just by helping them find answers.
27. EDS and Chiari Malformation
Chiari is yet another congenital condition (meaning you’re born with it) that can be common in those with EDS.
28. Slipping ribs hurt.
Can be caused from the way a bra pushes against a rib, cuddling, coughing, hormones, stress, weather, sitting in a particular position for an extended period of time, driving, etc.
29. Compensating & problem solving:
30. You can help!
31. What doesn’t kill us makes us stronger.