Editor’s Choice: Overcoming Obstacles and Fulfilling Dreams with Rare Disease

Happy Friday Patient Worthians!

PW Contributor Tom Seaman talks about what it’s like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and chiari, talks about invisible illness and the challenges spoonie’s face when it comes to working.

We also have a story on a man born with gastroschisis and how he didn’t let it stop him from achieving his dreams! Lastly, we have a DMD clinical trial announcement!

We hope you enjoy this week’s Editor’s Choice!




[/one_half] [one_half_last]

Overcoming Victim Mentality When Living with Chronic Illness

PW Contributor Tom Seaman is suffering from dystonia.

Read how he overcame the bitterness that sometimes comes with a rare disease diagnosis.

[/one_half_last] [one_half]

[/one_half] [one_half_last]

When You’re Disabled, But Not Disabled Enough

PW Contributor Nisa talks about her invisible illnesses and the challenges that come with others, like employers, not understanding.

Read more on being disabled, just enough to make working painful, but not enough to qualify for disability or social security in the US.

[/one_half_last] [one_half]

[/one_half] [one_half_last]

Boy Born with Gastroschisis Fulfills His Dream of Becoming an Airline Pilot

This inspiring story is about a man who was born with gastroschisis, but grew up to become a pilot.

Check out how his rare disease plight didn’t stop him from taking flight!

[/one_half_last] [one_half]

[/one_half] [one_half_last]

Duchenne Muscular Dystrophy Clinical Trial of Respiratory Function

It is always exciting to know that clinical trials are happening for a neglected disease.

Check out the details on this upcoming clinical trial.

[/one_half_last] [one_half]

Share this post