Elloise Charles has set out on a mission to raise awareness and money for progressive supranuclear palsy (PSP) after her father was diagnosed. His journey to diagnosis was similar to those of other rare disease patients; years of misdiagnoses, confusion, and frustration. After watching her father’s journey, Elloise has decided to raise money and awareness for the PSP Association by running a half marathon.
PSP is a brain disorder that damages the the nuclei, causing progressive issues with movement. It affects approximately three to six of every 100,000 people, although this number could be higher due to the amount of people who are misdiagnosed with Parkinson’s. This is because the symptoms of the two conditions are similar. PSP effects include issues with balance and walking, falling, sleep disturbances, changes in personality and judgement, stiffness, issues with eye movement, slowed movement, alterations in mood and behavior, speech issues, eating and swallowing problems, and depression.
The exact cause of this disorder is unknown, but medical professionals do know that progressive damage to nerve cells in the brain stem are a part of it. In rare cases, PSP is inherited from parents due to a mutated MAPT gene. In order to obtain a diagnosis, doctors will look for the characteristic symptoms, perform a clinical evaluation, look at patient history, perform MRIs, and use PET scans. Treatment is symptomatic.
Running for PSP
Elloise’s father, Alan, is the inspiration behind her half-marathon fundraiser. He was finally diagnosed with PSP after two years of being unable to put a name to the cause of his symptoms. Elloise has been by his side through it all, watching the progressive disorder take his ability to walk, eat, and speak.
She has decided to help in the best way that she could: raising money for PSP research so that someday, there will be a cure. Her run will also help to spread awareness, something that could help others reach the right diagnosis.
All of the money raised will go to the PSP Association, and you can donate to Elloise’s fundraiser here.
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