Ehlers-Danlos Awareness Month – Fact #6-9!

Sorry for the lack of EDS facts! I’ve had a strange few days topped off with a horrible headache and the nausea that comes with it. I went to lay down at about 11:30 am yesterday after only being up for a few hours and ended up not being able to get up until 6:00 am this morning! I’ve been feeling pretty awful, even for me. I wish I could say I feel rested after all that sleep but I definitely don’t!

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Fact #6: EDS can also be associated with rare and/or serious conditions such as tethered cord, cervical cranial instability, cranial settling, dural ectasia and chiari malformation. It’s important to be evaluated for these conditions if you have EDS and begin experiencing unexplained or new neurological symptoms. It’s also important to make sure the radiologist reading your imaging results is aware of your disorder and these generally rare manifestations, so that they don’t misinterpret them or miss them altogether.

Fact #7: The many potential ocular manifestations of EDS can include: high myopia, cataracts, lens subluxation, glaucoma, retinal detachments, photophobia and macular degeneration.

Fact #8: Postural Orthostatic Tachycardia Syndrome is a common and potentially debilitating symptom of EDS caused by an abnormally large increase in heart rate upon moving from a sitting or laying position to a standing one. This is often accompanied by a fall in blood pressure and decrease in blood flow to the brain. Severe cases of POTS can potentially incapacitate those who suffer from it preventing them from attending school or work and/or leading a normal life.

Fact #9: Because of the unpredictable nature of connective tissue disorders like EDS, and the enormous array of possible symptoms they can cause, it’s recommended that individuals with positive or suspected diagnosis of them receive ongoing, long-term medical care – preferably by specialists knowledgeable of the unique and possible complications they may cause.

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