Empowering children in HSP families

Posted - December 2019 in Living with HSP - Management & Treatment News

Choice about gene tests

 

A teenager in a family with HSP has been empowered through education and choice in deciding whether or not to know from a gene test if he also has the family form of HSP.

 

Article

Dane assisting his mother Tammy

Dane Widseth, 18, was 12 when the “H” in his mother’s diagnosis became one of the most important factors in his life. HSP: Hereditary Spastic Paraplegia.

Dane decided, at that age, with the support of his parents, Tammy and Brian, and counselors, to elect to “not know” the results of DNA testing that had been initiated by his sister Taytum.

The results that would let him know, for certain, whether or not he carried the gene that would determine his future, would be kept locked and sealed at a hospital, until such a time that he felt “ready to accept the news, for good or for bad” Dane said.

. . .

Dane’s mother, Tammy, first realized at the age of 29 that she had the disease that crippled both her father and brother when she first felt what she describes as “myoclonic jerks” in her legs, which persist to this day.

By the time she was in her mid-40s, the disease had progressed to the point where she was reliant on a wheelchair. Now, at age 50, she is determined to have a “positive mindset” every day in dealing with the exhausting muscle and nerve pains affecting her lower extremities. “People with any chronic illness need to be spot-on with your physical and mental health if you want any kind of quality of life” Tammy said.

By age 16, Dane says he “felt ready” to know the results of the DNA testing, with the help of counselors and family members “who helped build my confidence up”. When he found that he tested positive for the disease, he knew that did not determine “who I am or what I’m capable of”.

Read the entire article … 

 

SOURCE: Great Falls Tribune  Published 4:30 a.m. MT Aug. 26, 2019

‘Awareness Week’ for rare disease touches family close to home

by Mary Ellen Hendrickson, For the Tribune

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