NORD’s Living Rare Forum was Virtual in 2020, Here’s how it went

https://soundcloud.com/sunny-ammerman/nords-living-rare-forum-was-virtual-in-2020-heres-how-it-went As a rare disease patient and advocate, I have been an enthusiastic supporter of the National Organization for Rare Disorders (NORD) for many years, so I was absolutely thrilled when I discovered the annual NORD Living Rare, Living Stronger Patient Forum was coming to Cleveland, Ohio in 2020! It's only a few hours away … Continue reading NORD’s Living Rare Forum was Virtual in 2020, Here’s how it went

What PE taught me about my Rare Disease

https://soundcloud.com/sunny-ammerman/what-pe-taught-me-about-my-rare-disease I had originally planned for this article to be about my history of failing Physical Education (PE) classes. I suspected that because I was not properly educated on the health issues caused by my rare disease at the time, and had an inability to exercise like my peers, that this had a negative impact … Continue reading What PE taught me about my Rare Disease

5 tips for keeping good mental health while stuck at home (from someone who has had lots of practice)

I've got eyesight so bad I can't legally obtain a drivers license, and health so unpredictable I'm unable to work, so I've had to get used to spending a lot of time stuck at home. When states across the U.S. started ordering residents to shelter in place to flatten the curve of the rapidly growing … Continue reading 5 tips for keeping good mental health while stuck at home (from someone who has had lots of practice)

Another Adrenal Insufficiency patient has died from inadequate care.

I’m sad to report that a fellow adrenal insufficiency patient has died recently due to inadequate care from hospital staff who did not immediately administer the stress dose steroids her body needed. Her death never would have occurred if they had administered the steroids IMMEDIATELY. Instead, they insisted on making her wait while they ran … Continue reading Another Adrenal Insufficiency patient has died from inadequate care.