About EDS

Here are some links with info about just some of the health issues Rachel has been diagnosed with and is trying to manage and live with. Visit the links to learn more about them:

 

Ehlers-Danlos Syndrome (EDS) and Ehlers-Danlos Syndrome (EDS)
Tracheobronchomalacia (TBM) and Tracheobronchomalacia (TBM)
Dysautonomia
New Daily Persistent Headache (NDPH) and New Daily Persistent Headache (NDPH)
Neurogenic Bladder
Gastroparesis and Gastroparesis
Chiari Malformation and Chiari Malformation
Tethered Cord Syndrome and Tethered Cord Syndrome
Idiopathic Intracranial Hypertension/PseudoTumor Cerebri

(Please note: there is a mention in some of the articles that optic nerve changes are one of the primary signs of IIH/PTC. In *most* cases, this is true. However, in Rachel’s case, there were no visible optic nerve changes (observed by multiple doctors, including nationally recognized, neurological specialists). This is part of why the diagnosis was initially so difficult to obtain for Rachel and her doctors. It is unknown if this is just an unusual presentation or if it has something to do with the EDS (this is suspected, but not proven, at this point). Once the CSF pressure levels were tested by lumbar puncture, it was established that the pressure was high to extremely high (although the first lumbar puncture had issues/problems/failures during the spinal tap and actually showed low pressure, making the diagnosis even more difficult). We wanted to share this information because this is another instance where, for some reason, Rachel didn’t have “classic” symptom presentation, yet eventually, had a definitive (and repeatedly proven via testing) positive diagnosis. We are hoping that sharing this information could give help inform and encourage others who may be having difficulties getting a definitive diagnosis for IIH/PTC.

 

Also, check out our page with more information about EDS, as well as our additional EDS resources.