Mayo Clinic defines Ehlers-Danlos (EDS) as this: Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body.
People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This can become a problem if you have a wound that requires stitches, because the skin often isn’t strong enough to hold them.
Some of the broader symptoms of EDS is overly flexible joints, stretchy and fragile skin. There are 13 subsets of EDS with the most common one being hypermobility (hEDS).
This is the type I was diagnosed with many years ago as I hobbled around not being able to walk and feeling like I had the flu all the time as everything hurt constantly. It also makes your joints bend farther than they should causing sprains or joints to pop out of place.
Other symptoms include but are not limited to:
• Dental issues such as tooth crowding or bleeding gums
• Painful joints
• Feeling tired even after you rest
• Trouble focusing
• Headaches
• Flat feet
• Muscle weakness, especially in cold temperatures
• Loss of bladder control (trouble holding your pee)
• Dizziness
• Digestive issues (such as feeling bloated or gassy often)
It isn’t just about the joints either but you’ll see below that it affects so much of our lives. Every day is certainly an adventure! Here is a great article I wrote about what happens from time to time in my life with this syndrome.
So how does one live with EDS? Here are a few tools we use to manage pains, sprains, strains and issues that arise throughout the day.
I feel blessed that I can now walk and I have the ability to spend time in the pool each day exercising. I am able to pace myself and slow down when I need to and I realize there are many people much worse off than me. This isn’t a very familiar syndrome but as we raise awareness we can learn more and find ways to ease a person’s journey.
In the meantime I am grateful to God that He is my daily strength.
“The LORD is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him.” Psalm 28:7
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