|Posted by Margaret Donohue on|
Jessica Jacobs died in August. She had Ehlers-Danlos Syndrome. She is also described as having Postural Orthostatic Tachycardia Syndrome. I say described because I’m not sure I believe that. I think she had Ehlers-Danlos Syndrome with Autonomic Dysregulation and postural orthostatic tachycardia syndrome is just a part of that. She lived most of her adult life in Washington, DC but moved back to Twain Harte, California when she became too disabled to continue working. She wanted to be closer to her family.
Ehlers-Danlos Syndrome has several variants. The symptoms can consist of a variety of any of the following: hypermobility of the joints, thoracic outlet syndrome, early onset of osteoarthritis, degenerative joint disease, long slender fingers with swan-neck deformity, boutonniere deformity of the fingers, tearing of tendons or muscles, scoliosis, kyphosis, a tethered spinal cord, muscle pain, joint pain, trendelenberg’s sign (balance instability), Osgood-Schlatter disease, fragile skin, atrophic scarring, easy bruising, multiple skin folds, subcutaneous spheroids, molluscoid pseudo tumors, valvular heart disease, postural orthostatic tachycardia syndrome, arterial rupture, aneurysm of the ascending aorta, Raynaud’s phenomena, heart murmur, heart conduction abnormalities, hiatal hernia, gastrointestinal dysmotility, dysautonomia, the ability to hyperextend the tongue to touch the nose, anal prolapse, collapsed lung, Arnold-Chiari malformation, platelet aggregation, pregnancy complications, sleep apnea, chronic pain and insensitivity to local anesthetics., drooping eyelids.
Jessica Jacobs was an advocate for the disabled and a blogger that wrote about her poor medical care and lack of coordination of her medical treatment. The types with dysregulation of the autonomic nervous system, and bleeding disorders are at risk for sudden death. Jessica noted all the places that were not accessible to her in a wheelchair, including her hospital room bathroom. She attempted to ensure that all her doctors could share medical records but carried around a binder of them because they couldn’t. She found her primary care physician dumping her onto uncoordinated specialist care abhorrent. Unfortunately, this is a common practice with any rare medical condition. It’s a bit more common with Ehlers-Danlos Syndrome.
She’ll be missed.