Rhiann Johns

April 12-12-12 Project Member

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About Rhiann:

Doctors took notice that as a newborn Rhiann held her legs rigid. This may have been the first sign of a neurological disorder. Rhiann would not be diagnosed until 24 years later.  At the age of 8, Rhiann started having attacks of dizziness with visual disturbances, which led to the development of an anxiety disorder leading doctors to suggest anxiety as the root medical cause.  However, after an MRI and a full neurological exam she was diagnosed with a long-standing brain stem lesion, and spastic paraparesis.

Although, she has had stiffness in the legs, Rhiann did not realize it as an issue because it has always been her experience. However, the stiffness and weakness has severely progressed and now she is unable to stand for more than 10 minutes before they give way. In addition, Rhiann now has constant dizziness, and imbalance, and has fallen regularly, as well as frequent attacks of vertigo and visual disturbances in which everything moves to and fro with double vision too.

Despite living with health problems throughout her childhood and teenage years, Rhiann pushed through and was able to obtain a degree in Psychology. Rhiann has started a blog where she documents living with a neurological condition.


Condition: Long-standing Brain Stem Lesion, and Spastic Paraparesis.

 Brain Stem Lesion-

“A brain lesion describes damage or destruction to any part of the brain. It may be due to trauma or any other disease that can cause inflammation, malfunction, or destruction of a brain cells or brain tissue. A lesion may be localized to one part of the brain or they may be widespread. The initial damage may be so small as to not produce any initial symptoms, but progresses over time to cause obvious physical and mental changes.

A brain lesion may affect the neuron directly or one of the glial cells thereby indirectly affecting neuron functions. ”

Spastic Paraparesis-

“Mild or moderate loss of motor function accompanied by spasticity in the lower extremities. This condition is a manifestation of Central nervous system diseases that cause injury to the motor cortex or descending motor pathways.”