Editor’s Choice: Feeling Alone and Searching for Quality of Life

Happy Fall Friday Patient Worthians!

This week we have the amazing story about a woman with dystonia. We also have a video review of a man diagnosed with CVID.

Additionally, we have a post that is relevant to a lot of rare diseases: the feeling of loneliness after diagnosis. Lastly, we have good news for cushing’s disease!

So sit back and enjoy this week’s Editor’s Choice!



[/one_half] [one_half_last]
Fighting for Your Quality of Life with Dystonia

PW Writer Sabina Kennedy covers the ins-and-outs of living with dystonia.

In this post, she tells the story of a woman who has been a dystonia patient her whole life, and who is now fighting the politics of getting the medical assistance she needs.

[/one_half_last] [one_half]

Source: pexels.com

[/one_half] [one_half_last]
Prepare to Be Inspired by This Man’s CVID Journey

We love uplifting stories about patients overcoming the challenges they face in rare disease.

Watch this man’s video on his CVID journey.

[/one_half_last] [one_half]

Source: pixabay.com

[/one_half] [one_half_last]
Why a CF Diagnosis Can Make You Feel So Alone

Being diagnosed with a rare disease presents so many challenges to patients and the support around them.

Loneliness and isolation can be one of those challenges. Read more here.

[/one_half_last] [one_half]


[/one_half] [one_half_last]
Cushing’s Disease News Guaranteed to Get You Excited

As we learned at the 2016 Global Genes Summit a few weeks ago, collaboration is key in order to adequately fight rare disease.

In the case of cushing’s, big pharma and the NIH have worked together to further early diagnosis of cushing’s.

[/one_half_last] [one_half]

Follow us