community

Summer has always been a struggle for me. While most people celebrate the warmer months and are off enjoying the great outdoors, I dread this time of year because I am very heat-sensitive. As soon as the temperature rises above 22 C (72 F), I feel terrible. The signals…

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…

As a neuromyelitis optica (NMO) patient, sometimes I am under the impression that I am at a disadvantage compared with my healthy co-workers. Some of the daily routines that they complete effortlessly are a struggle for me. For this reason, at the end of my workday, I often feel as…

In early April, I became a grandmother (Gigi) for the first time. Reaching this important milestone gave me pause. In the months leading up to the baby’s birth, I thought a lot about what kind of grandmother I would be. Phoenyx was born just 16 days after my 50th birthday,…

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

I still remember the feeling of despair I had while sitting on a cool stretcher in the neurologist’s office, after hearing devastating news about my health. The neurologist admitted that he had no idea what I had, but he assured me it was a severe condition. I wondered why after…

My quest to become a wheelchair owner and user began with pitching the idea to members of my care team. As I shared in my last column, that didn’t go as smoothly as I’d hoped. But being persistent paid off when one of my doctors stepped up and…

When someone in your family has an illness, it can cause physical wear and generate an emotional and financial burden. The person who gets sick often loses their income but must pay medical bills in addition to regular bills. Even after being discharged from the hospital, a patient will…

When I was being diagnosed, my initial MRI revealed that I had long lesions over several sections of my spinal cord. While I knew nothing about the disease I was about to be diagnosed with, I understood that any damage to my spinal cord was bad news. It meant I…