Laura Bonnell’s two children have cystic fibrosis (CF). This condition affects the respiratory system and can severely impact patient’s immune system.
She explains how she didn’t own a single N95 mask and was struggling to keep up with the number of disposable masks she needed to keep her daughters safe.
A lack of accessibility to this one simple product could mean life or death for her children.
The Pandemic and Rare Disease
Even before the pandemic began, many rare disease patients lived with personal protective equipment (PPE) in their daily lives. As living with a rare condition can limit your immune system, many individuals were already exceptionally cautious.
A survey by the National Organization of Rare Disorders showed that about one in every five rare disease patients wear PPE regularly. Many of these individuals also indicated that securing the PPE they require is a challenge.
This pandemic, as you might have guessed, hasn’t made it any easier.
Bonnell
Bonnell explains that when she first started looking for PPE at the beginning of the pandemic, she couldn’t help but panic. She couldn’t find what she needed and neither could anyone else in the CF community that she reached out to. But she was determined to do what she needed to do for her children.
Bonnell reached out to the Oakland County Commissioner and was able to pack up a full truckload of PPE, including masks and gloves. She then distributed these materials to CF patients all over her state of Michigan.
However, as the pandemic has raged on, she continues to face difficulties. She’s been unable to fulfill the requests of CF patients in other states, let alone the requests of her own daughters.
Guarnieri
Aimee Guarnieri is another rare disease patient who has faced similar difficulties. She is diagnosed with primary immune deficiency disease and has resigned to staying in her house due to a lack of PPE. The shortage also means she hasn’t been able to have visitors.
Guarnieri faces additional challenges because where she lives, she doesn’t have online delivery access. She can’t even order her groceries online.
Looking Forward
Some rare disease patients have been forced to rely on community donations of PPE in order to protect themselves during this pandemic. But they also understand that if those around them aren’t wearing their own PPE, they aren’t protected anyway.
Even if PPE was fully accessible, the price can add up for these families who have no choice but to armor up. One patient explains “I don’t get to be tired.” Rare disease patients must keep on powering through in order to protect themselves.
You can read more about this issue here.
