A diagnosis many years in the making – Systemic Scleroderma

In this week’s Patient Files, Emma Straub talks about the anxiety that came with trying to define a disease that’s affected her for 22 years.

Emma Straub says she’s been sick her whole life. From a young age, she struggled with gastrointestinal issues and other medical problems that no doctor could explain.

In October of 2012, she found a bald spot in the back of her head. At the time, she had also been worried about a rash on her leg that had been there for quite a few months. Her self diagnosis: Eczema.

After coming down with a week-long fever of 104, she quickly realized her condition was far more severe than she originally thought.

Following a series of tests and an inaccurate fungal infection diagnosis, she discovered the real cause of her medical issues was an auto-immune disease called Scleroderma.

Scleroderma is a chronic hardening and contraction of the skin and connective tissue. In Straub’s case, with Systemic Scleroderma, the disease effects her skin as well as her internal organs.

In this week’s Patient Files segment, Straub talks about her reaction upon hearing the final diagnosis, and her strategy for coping with the disease.

A fundraiser for the Delaware Valley Chapter of the Scleroderma Foundation will be held this Friday, Feb. 7, at City Tap House on Walnut Street in Philadelphia at 8 p.m.