Today, patients with FD live all over the world and many are cared for by brilliant doctors at local hospitals who take care of their acute medical emergencies and chronic care needs. Part of our job is to spread the scientific knowledge of FD. We have put together a list of articles that you can pass on to your doctors and nurses that share our current understanding of FD. Clicking on the links will give you access to the full text articles of the papers.
Current Treatments: A expert opinion review on the current treatments that covers all the body systems, including the blood pressure, eye, growth, and psychological features of FD. This provides a basic understanding of how FD impacts the various organs. It lists the commonly used drugs, their dosages, and potential side effects. We wrote this article as a general guide that covers the main principles of treatment in one place. It puts our current understanding in the hands of treating physicians.
Expert opinion in Current Treatments for FD
Guidelines for lung care: We put together a team of doctors, nurses, therapists, and scientists to create a comprehensive guide to lung care in patients with FD. We wanted to share this information with chest experts around the world so they can have an understanding of what types of breathing problems occur in FD, how they manifest, how common they are, and how to treat them. It covers everything from aspiration, reflux, chest wall problems, and the importance of detecting and treating sleep disordered breathing. It’s really one of the most in-depth articles on FD, which stems from decades of research, in the context of today’s advances in lung care.
Respiratory care in familial dysautonomia Systematic review and expert consensus recommendations
What to do in an acute crisis: A case series that describe our experience in managing patients with FD when they are admitted for an acute crisis using dexmedetomidine. This article gives information on the intravenous titration of dexmedetomidine and how patients should be monitored.
Precedex for refractory adrenergic crisis in FD
We really value the insights of clinical specialists working with our patients at the front lines. Please encourage your local medical team to call us at (+1)212-263-7225. We would be happy to talk with them more about the care of patients with FD. They are part of our international community of medical specialists. We are always happy to hear from them and share our thoughts.