NBIA families share their stories of separation, lost rituals during pandemic
Although the COVID-19 pandemic has raised many medical concerns for NBIA families, its impact is far-reaching, affecting their financial, social and emotional well-being.
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Living with NBIA during a pandemic
Rare diseases, such as NBIA, always present unique challenges for families. During this COVID-19 pandemic, those challenges are amplified, leaving some families feeling anxious and worried for their loved ones.
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Emergency Information Form for Children with Special Needs
It’s important to have a completed, up-to-date Emergency Information Form at the ready should your child need hospitalization. Set a date to update once a month as you don’t want to be filling in this form when faced with an emergency.
Here’s a link that gives more information about the Emergency Information Form and an online fillable one that you can easily update:
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Summary of the April 14, 2020 Webinar: Living with NBIA During the COVID-19 Pandemic
Here is a brief summary of the information provided by NBIA doctors and experts during the webinar.
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Webinar Recording: Living with NBIA During the COVID-19 Pandemic
Having a family member with NBIA during the COVID-19 pandemic presents a whole new layer of challenges. How do you protect loved ones with NBIA? Should you take them outside the house or let anyone in? How do you maintain their therapies and skills during a time of social isolation? What if they are in a clinical trial? And what should you do, if God forbid, they contract a serious case of the illness?
The panelists are Dr. Susan Hayflick, Dr. Penelope Hogarth and Allison Gregory of Oregon Health & Science University, and Katie Flores, a speech pathologist from Open Door Pediatric Therapy in Houston, Texas. Patricia Wood, President of NBIA Disorders Association will be the moderator.
TOPICS:
- Specific medical problems that increase risk for serious complications from COVID-19
- How to keep your loved one safe
- Special considerations for NBIA individuals in clinical trials
- Making a plan if your loved one falls ill
- Coping with an extended absence from necessary therapies
- Telehealth therapy sessions for home exercise programs
Teletherapy Presentation
Katie Flores, a speech language pathologist at Open Door Pediatric Therapy in Houston, Texas, addressed coping with the absence of regular therapy sessions and finding other options. Here are the slides from her talk.
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