Christine Mitchell of Everett, Massachusetts, wears a mask whenever she leaves the house. It is usually a black KN95 that covers her mouth and nose. Much of the world has moved on from the COVID-19 pandemic. Mitchell, however, cannot afford to ignore it.
Mitchell has Marian Syndrome. Marfan syndrome is a rare genetic connective tissue disorder that affects the skeleton, lungs, eyes, heart, and blood vessels. The disorder is caused by a deficiency in the gene that directs the body how to create fibrillin-1, which is commonly inherited from an affected parent. One-quarter of cases could be the result of a sporadic gene mutation.
Fibrillin-1 is a protein present in the body’s connective tissues. Transforming growth factor beta, or TGF-B, is a protein whose production is increased due to the genetic defect in fibrillin-1. Overproduction of this protein is what causes Marfan syndrome.
She’s had a heart valve replacement, lungs collapse, and blood clots. She is also at significant risk of being critically ill from COVID. As the pandemic fades into the background for politicians and the general public, Mitchell says she cannot move on.
Taking precautions can be critical if you are disabled. COVID-19 was the top cause of death among people with intellectual disabilities, Cerebral Palsy, and Down syndrome in 2020, according to a study done by Syracuse University. As a woman with Cerebral Palsy, I worry about what could happen to me if I contract COVID-19.
Millions of Americans are elderly, immunocompromised, or have other conditions that make them more vulnerable to severe COVID sickness, even after immunization. High-risk groups in Massachusetts are now facing a new challenge: the end of the mandate that all patients, visitors, and staff wear masks in healthcare facilities. Mitchell says that the policy change exposes patients to COVID and other viruses unnecessarily, putting her in a difficult position.
Hundreds of patients, healthcare providers, and other public health advocates are urging state officials to reverse course. Some of them say that they’re “on strike” from medical care and refuse to receive treatment outside of dire circumstances.
They claim that unmasking is dangerous — for everyone. Even healthy people are in danger of contracting COVID and developing long-term symptoms, even though vaccination reduces that risk.
The end of universal masking, according to Colin Killick, executive director of the Disability Policy Consortium, disproportionately harms disabled people who require regular medical care.
Individual healthcare providers must create a mask policy without state regulation. In most situations, the largest hospital systems have made masks optional.
Patients at Mass General Brigham, for example, can request that their provider wear a mask. However, providers don’t have to comply with the request.
Laura Sabadini of Weymouth has a connective tissue disorder that affects her entire body, including her immune system. She asks her providers to wear masks. She also attempts to avoid waiting rooms by staying in her car until the doctor becomes available.
Sabadini stated that she only leaves the house for medical appointments and never for social reasons. She needs to schedule a procedure. However, she is hesitant to visit a hospital where patients and staff are no longer wearing masks. Mitchell says she avoids places where she would need to remove her mask, including restaurants — and even the dentist’s office.
For people with disabilities and chronic illnesses, the pandemic has been incredibly difficult to deal with. If people in your life seem anxious, please be patient with them. For many of us, catching COVID-19 could be life-threatening. Our lives matter and are worth saving.
“Marfan Syndrome.” Johns Hopkins Medicine; 8 Aug. 2021, http://www.hopkinsmedicine.org/health/conditions-and-diseases/marfan-syndrome.
McCluskey, Priyanka Dayal. “With Masks off in Hospitals, People with Disabilities Weigh the Risk of Care.” WBUR News, 1 June 2023, http://www.wbur.org/news/2023/06/01/covid-masks-disability-immunocompromised.
Landes, Scott D., et al. ‘COVID-19 Mortality Burden and Comorbidity Patterns among Decedents with and without Intellectual and Developmental Disability in the US’. Disability and Health Journal, vol. 15, no. 4, Oct. 2022, p. 101376, https://doi.org10.1016/j.dhjo.2022.101376.