Opinion: On Rare Disease Day, check in on special needs families

Note: This Op-Ed was published on NJ.com on Saturday, February 27, 2021.

For more than 30 million people in the United States – half of which are children under the age of 5 – the pandemic has merely been a continuation of their everyday lives.

February 28 was Rare Disease Day, and it should serve as a reminder that these people – and their families – experience isolation and fear of exposure to life-threatening illnesses under normal circumstances. Amidst a global pandemic that is exacerbating their struggles, we must help ensure their mental wellbeing as they deal with the heartbreaking gravity of these conditions.

I know what families and parents of children with rare diseases are going through, because I am one of them.

Throughout 2010-2011, I spent nearly the entire course of my first son Ilan’s life either at home limiting interactions to reduce infection risk or in the hospital as he was treated for a respiratory infection. He had Zellweger Spectrum Disorder; a rare, debilitating disease that results in multiple disabilities and a very shortened life expectancy. He passed away on October 23, 2011, just a few months after his first birthday.

I will never forget the obstacles we had to navigate, and the anxiety I felt, trying to ensure he received the best possible care. There were also feelings of isolation and loneliness – something more than half of parents of children with rare diseases report feeling according to a national study on rare disease caregivers.

This was, of course, under normal everyday circumstances. Add the COVID-19 pandemic, and these challenges increase exponentially.

Rare disease families are currently reporting increased difficulty in accessing services and equipment (including PPE), changes in health care insurance coverage due to job loss during the pandemic, and most have had to cancel necessary medical appointments, therapies and in-home nursing services for fear of exposure.

Additionally, families needing to travel for lifesaving treatments or unanticipated hospitalizations may be faced with restrictions in many medical facilities which allow for only one parent to accompany their child. This leaves already isolated caregivers with even less support.

The degree of social distancing necessary from friends and family is also considerably greater when caring for a child with compromised health. Collectively, the consequences of these challenges can mean grave health regressions for the child and further deterioration of the entire family’s mental and physical health.

My experiences changed the course of my life’s work, and I now conduct research and serve as an advocate for rare disease families. In a recent interview, one parent described their experience during the COVID-19 pandemic “…like being put in timeout on your already deserted island.”

It’s often difficult to know how to best support families affected by a rare disease, especially as everyone is struggling under the strain of an ongoing global pandemic. Nevertheless, there are a few simple gestures that can have an immediate and direct impact on these families.

• Reach out: Even if you don’t know what to say or how to help, a text, call, or video call simply acknowledging their experience will help families feel heard and supported.
•  Make an offer: Invite parents/family caregivers out for a (masked) walk. Offer to deliver groceries or drop off a meal.
•  Be respectful: Understand that families affected by rare diseases need to be extra cautious during the pandemic when interacting with others. Consider postponing visits and replacing them with other forms of meaningful communication.

Our family was fortunate to receive considerable community support throughout the course of our son’s life. Even when he passed, he was surrounded by our entire family as he took his last breaths in the hospital.

In the hardest moment of my life, that loving support contributed immensely to my healing. Without it, families facing similar circumstances during the pandemic will be alone during their most difficult times. The effects of these traumatic experiences can be long-lasting.

The community surrounding a family affected by a rare disease is crucial to supporting its overall quality of life. So, please reach out to these families in your life – because now, more than ever, your kindness will be life-changing.

Mousumi Bose is an assistant professor at Montclair State University and researches communities affected by rare pediatric disorders. She is the mother to Ilan as well as two younger sons, and lives in New Jersey with her family.