Respiratory Care Recommendations for Myotonic Dystrophy Patients During the COVID-19 Pandemic
MDF would like to provide respiratory care recommendations for myotonic dystrophy patients during the COVID-19 pandemic.
We understand that this is a very challenging time and we would like to provide tips for patients, caregivers, and medical providers on the use of noninvasive positive pressure ventilation (NIPPV) if you have been exposed to this virus or have symptoms of COVID-19 infection.
Please consider keeping a copy of these recommendations with you to provide to your medical team if needed.
Les directives spécifiques pour les patients atteints de dystrophie myotonique et leurs médecins en cas d’infection par COVID-19, crées par Myotonic et traduites par NMD4C, peuvent être téléchargées ICI.
We encourage you to advocate strongly for yourself if you begin to feel ill and need to interact with a medical provider. Let them know you have myotonic dystrophy and that these guidelines were developed by leading pulmonologists and neurologists specifically for myotonic dystrophy patients suspected of being infected with COVID-19.
Please remember to follow CDC guidelines to help stay healthy and to first call or use telemedicine if you have questions for your doctor. These steps will help you avoid unnecessary trips to the hospital that may place you at increased risk of exposure to the virus.
Be well and healthy,
The MDF Team