DFW EDS and HSD Support Group

05/15/2025

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05/14/2025

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Ehlers Danlos Fact 11. May is Ehlers Danlos Syndromes Awareness month! Ehlers-Danlos is a genetic connective tissue disorder which produces faulty collagen that can lead to issues in the brain, spine, GI tracts, joints, bones, skin, blood vessels, heart, and every organ which has collagen holding our parts together. Our mascot is the zebra because “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. For more information please see Ehlers-Danlos.com and share awareness for this painful genetic disorder
🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓

05/14/2025

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05/14/2025

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05/14/2025

05/14/2025

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It’s not anxiety. End of.

These patient experiences continue to happen for many patients. EDS Awareness Month is an important part of improving education and knowledge.

I’m still baffled as to how anyone could think symptoms of CCI are psychosomatic 🧐. These can be really disabling conditions. I’m not sure anyone would want to create that. If the patient appeared anxious it was more likely down to the fear of being dismissed. So we go full circle.

Long way to go for many patients to have improved patient outcomes.
# chronicillness

05/13/2025

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Ehlers Danlos Awareness Fact
Surgical Complications * Those with EDS e at high risk for multiple different surgical complications.

Skin and sutures * Skin fragility is a main symptom for those with EDS. Because of this our skin can rip from stitches and the wound will open back up, especially in those with the Classical type. Imagine seeing your insides! This can also put us at high risk for infections to develop. We follow a strict protocol whenever we need a surgery. We need more layers of stitches and they should be left in twice as long then normal. We also unfortunately develop horrible scars from our surgeries.

Anesthesia and locals * Those with EDS either do not respond to anesthesia or we burn through it to fast. Imagine waking up in the middle of surgery! It’s actually happened multiple times to me and it never gets less scarier. Because of this we may need more anesthesia than normal. We also do not respond to local anesthetic like lidocaine. We may need more than normal.

Bleeding * EDS patients often have bleeding disorders. This may cause us to be more at risk for heavy bleeding. Blood should always be on standby.

Risk of worsening * especially with orthopedic surgery, we have a risk of actually making the problem worse in regards to pain, hypermobility, and destroying more of our already destroyed Connective Tissue. A lot of surgeons actually won’t touch someone with EDS.

Cardiac Risks * those with EDS likely already have cardiac issues like Dysautonomia. In surgery, this can cause changes in our heart rate, blood pressure and even cause arrhythmias. Our O2 may drop which would cause us to be intubated when usually it wouldn’t be needed in other cases. Our anesthesiologists watch us like hawks and have intubation trays and medications on standby to help treat any of these symptoms if they happen.

Pain Control * just like anesthesia we often don’t respond to pain medication. It sucks! We often need higher doses then normal or even need to be admitted for IV medications.

Comment your good and/or horror stories of EDS and surgery!

05/13/2025

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05/13/2025

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05/13/2025

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05/13/2025

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05/13/2025

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