Rare Disease Parent Meets with President Trump

By: James Radke

Source: Rare Disease Report

On Monday March 13th, rare disease parent Stan Summers of Box Elder County, Utah talked with President Trump about the struggles that many rare disease families face with regard to medical insurance. He talked about his frustration in dealing with the high deductible payments and the need for multiple jobs in order to care for his son who has a rare, chronic disease (IGg4 Systemic Sclerosing Disease). 

Summers' remarks were part of a listening session about healthcare hosted by President Donald Trump and Vice-President Mike Pence. Stan Summers’ son, Talen, has IGg4 systemic sclerosing disease which is a systemic fibro-inflammatory disorder. Talen was a healthy young man until his mid-teens when the symptoms began to appear. Years of pain and countless doctor visits finally led to a correct diagnosis when he was 23. Now 26-years-old, his muscles continue to harden around his organs and he is in constant pain but as his blog post notes, he will never give up.

The full video can be viewed here: http://www.raredr.com/news/rare-parent-trump