Life with Ehlers Danlos Syndrome

By Alyssa, Ehlers-Danlos syndrome, United States, February 29, 2020

Declare Rare...I am the face of Rare!

Hi, I am Alyssa and I am 20 years old. I officially received a diagnosis of hEDS when I was 17 years old. I have exhibited symptoms my whole life but doctors could never fit the puzzle pieces together. I had very hyper-mobile joints, joint pain, fatigue, poor wound healing, skin that bruised easily, joint subluxations etc.. I went years misdiagnosed because a lot of doctors are unaware of EDS. For me Ehlers Danlos Syndrome is so much more than just having hyper mobile joints. Ehlers Danlos Syndrome is a genetic disorder that causes me to have weak of defective collagen. So this disorder affects my joints, skin, blood vessels etc.. Ehlers Danlos Syndrome causes me to also have poor wound healing, chronic joint pain due to dislocations of joints, fatigue, skin that bruises easily etc...

With having EDS comes many co conditions...I have Craniocervical instability, Chiari Malformation and Cranial Settling due to having weak connective tissue. My neck is not strong enough to support the weight of my head. That caused my skull and brain to settle down on my spine compressing my brainstem. This disorder affects my balance, memory, vision, neck pain, pain at the base of my skull, muscle spasms etc... I had a craniocervical fusion in May of 2018 to help treat the instability as well brain & brainstem compression.

EDS has caused me to have Postural Orthostatic Tachycardia Syndrome which is a malfunction of my autonomic nervous system. This disorder causes me to have dizziness, migraine, brain fog, cold/heat intolerance, blood pooling, Tachycardia, high blood pressure, numbness/tingling, bloating etc... 

In June of 2018 I needed surgery to have a tethered cord release due to a tethered spinal cord. Then in January 2019 I had a VP shunt placed due to Pseudotumor Cerebri also know as Intracranial Hypertension.

 

*Find others with Ehlers-Danlos Syndrome on RareConnect, the online platform for people affected by rare diseases

 

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