Lisa’s Diagnosis

Lisa has Hereditary Diffuse Leukoencephalopathy with Spheroids (HDLS). In 2013, Lisa ran her 10th and last marathon, the Napa marathon. She ran the first half with her dad who, at 80 years old, had to drop out from a foot injury. In 2014 she had balance issues and stiffness in her wrists (likely unrelated carpel tunnel syndrome). In 2015, she had to stop running. In 2016, her conditioned continued to decline slowly. In 2017, Lisa was struggling to walk on her own, and it was difficult to understand her. In 2018, Lisa can no longer walk on her own, and talking is very difficult.
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Lisa has Hereditary Diffuse Leukoencephalopathy with Spheroids (HDLS).

Progression

In 2013, Lisa ran her 10th and last marathon, the Napa marathon. She ran the first half with her dad who, at 80 years old, had to drop out from a foot injury.

Symptoms

Motor Skills

Lisa has trouble speaking

Full Diagnosis History

Lisa’s Full Diagnosis (password protected) — a full version of this page with notes broken down by year to help me track progression, identify symptoms, and to document symptom treatments including medications and their “perceived” effect.

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