My teenage son has Okur-Chung neurodevelopmental syndrome (OCNDS), an extremely rare genetic disorder resulting from a mutation in the CSNK2A1 gene, which produces the CK2 protein found in every cell of the body. While symptoms vary among patients, common ones include autism, intellectual disabilities, short stature, low muscle tone, and speech delay. Last year, he was diagnosed with autoimmune encephalitis, leading to a two-month hospital stay. Currently, his treatment involves regular intravenous immunoglobulin infusions and a transplant rejection medication that significantly suppresses his immune system.
Since the onset of the Covid pandemic, our family has drastically altered our lifestyle to safeguard his health. I work from home, avoiding travel and in-person meetings to reduce the risk of contracting Covid or other viruses. My husband has left the workforce to become a full-time caregiver and homeschool our son, minimizing his exposure to illness. When we visit public places like the local library, museum, or farm, we adhere to safety measures by wearing masks and practicing social distancing.
These precautions have become even more critical as North Carolina is among 32 states currently experiencing a measles outbreak. The disease is mainly spreading among school-age children and emerging in common family gathering spots.
While the resurgence of measles poses a health risk to all children, it is particularly devastating for immunocompromised kids like mine.
The measles outbreak has exacerbated our challenges in socializing or leaving the house without meticulous planning and safety precautions. It also highlights the inadequacies in healthcare innovation when basic health and safety principles, such as vaccines, masks, and clean air, are neglected.
Some friends and even healthcare professionals dismiss the fear of measles as exaggerated, either doubting the reality of the threat or placing undue trust in medical advancements to mitigate the risks of such an old disease.
As an advocate for healthcare progress, I dedicate my professional life to working with innovative medical technology that benefits patients. Personally, as a rare disease parent, I am actively involved with Citizen Health, an artificial intelligence healthcare company for parents of children with rare diseases, and I serve on the parent advisory board for the CSNK2A1 Foundation, supporting those with OCNDS. Although I have faith in technological advancements and those at the forefront of healthcare, the response to the measles outbreak underscores how much the U.S. has forgotten from the Covid experience.
During the Covid pandemic, everyone in the U.S. felt its impact in some manner. States approached it differently, but a consensus about masking, particularly in medical settings, and clean air emerged. There was also unified federal support for rapid vaccine development.
However, misinformation targeted everything from vaccines to the effectiveness of masks, undermining public health efforts. This misinformation and lack of coordination between state and federal public health standards have led to the current public health crisis.
According to the Centers for Disease Control and Prevention, the measles virus can remain active in an airspace for up to two hours after an infected person departs. If exposed, up to 90% of non-immune individuals nearby can become infected. Measles can cause lasting harm, weakening the immune system and making individuals susceptible to other infections for extended periods. Children who recover may endure severe complications such as ear infections, pneumonia, diarrhea, dehydration, malnutrition, blindness, and brain inflammation.
Despite this, schools have made little progress in implementing adequate air filtration to reduce child-to-child transmission. Parents initially advocated for air filtration systems in schools during Covid, and federal programs aimed to update filtration and HVAC systems, but accessing the funds proved challenging. Progress has stalled, and modern tools like air filtration, crucial for preventing illness spread, including measles, are often seen as excessive or irrational, despite evidence showing they lead to improved educational outcomes for children.
Amid these challenges, I take my son for his intravenous immunoglobulin treatments, surrounded by other immunocompromised children. Many medical professionals in these settings do not wear masks between rooms. Our family consistently wears masks during treatments, but we often receive disapproving looks from other patients and staff, highlighting a disconnect in basic safety protocols.
Fortunately, our family is fully vaccinated against measles, and North Carolina maintains relatively high vaccination rates, with an estimated 94% of kindergarteners completing the measles, mumps, and rubella vaccine series for the 2024-2025 school year. However, there are efforts to reduce school vaccine mandates nationwide. In neighboring South Carolina, where exemptions are increasing, nearly 1,000 measles cases have emerged, primarily in Spartanburg County, which borders North Carolina. Viruses do not adhere to state lines.
Approximately 15 million children in the U.S. have rare conditions like my son, many of whom face high risks from the current measles outbreak due to developmental, physical, or intellectual disabilities. While our situation in North Carolina may seem severe, countless families are making similarly critical decisions as measles spreads. These families are being overlooked as basic public health lessons from Covid are ignored, negatively affecting everyone in affected communities.
Explaining to a 13-year-old with mild intellectual disability why he must continue to wear a mask and exercise more caution than others is challenging, especially when he sees peers visiting places like arcades or thrift stores without concern. While I am committed to doing everything necessary to protect him, I urge healthcare leaders and government officials to prioritize the fundamental principles of public health alongside technological advancements.
Penelope Gatlin is a rare disease parent, advocate, and member of the Parent Advisory Board of the CSNK2A1 Foundation.
