Editor’s note: We asked patients, leaders of rare disease patient organizations and CSL Behring employees to cast ahead to 2021. We’re sharing their responses in a series of articles. Today, we’re focusing on perspectives from three rare disease patients.
When the COVID-19 pandemic struck, many said rare disease patients were uniquely qualified to cope. The tedious precautions and vigilance required to avoid infections was nothing new for many people who live, day in and day out, with a serious chronic illness.
Familiar though they were with infection control, the uncertainty and isolation wasn’t easy for anyone. And yet they were able to find specific reasons to be hopeful for 2021. Here are insights from three rare disease patients:
The pandemic forced virtual communication - and gave some patients access to their rare disease community for the first time.
“ZOOM-styled communication has brought more of us together and has brought many sufferers too ill or without means, to the table. A communications plus,” said Richard Lovrich, who has the rare disease Alpha 1 Antitrypsin Deficiency, a genetic disease that affects the lungs and breathing.
In a typical year, Lovrich would be on the road raising awareness and connecting with fellow patients. Instead he stuck close to home, and logged a lot of cycling miles for Alpha 1 Awareness month.
COVID-19 taught the world about donating plasma to make medicines – something rare disease patients depend upon.
Melissa Mehaffey lives with the rare disease hereditary angioedema, a dangerous swelling disease that can be treated with a plasma-derived medicine. She said she personally spread the word about the need for plasma donors.
“I personally know three individuals who have since started donating. I thank them each time I have the opportunity,” she said.
What does a world-traveling adaptive athlete do in a pandemic? She adapts.
Like Lovrich, Karen Skålvoll has Alpha 1 Antitrypsin Deficiency and keeps a busy schedule of travel and advocacy work. Despite her lung condition, she normally competes in weight training and endurance competitions around the world. Skålvoll, for instance, has pulled a plane. But the pandemic cancelled all her planned trips and competitions.
She adapted, kept on training at home in Germany, and poured her energies into cooking healthful food and gardening. Skålvoll said she found a ray of hope in the way the Alpha 1 community connected more than ever and gave back more than ever in 2020. When she looks ahead to a 2021, she’s eager to renew and reinforce those connections – in person.
“I am positive that the rare disease community will be unstoppable when we again can travel the world to spread awareness,” she said.