Researchers led by Dr. Silvia Smith of the UNCP Biology Department have launched a three-year study to better understand shortness of breath in dysautonomia patients. In addition to Dr. Smith (Principal Investigator), research team members include Co-Investigators Drs. Courtney Alexander and Crystal Walline of the Biology Department, and Dr. Andrew Latham of the Mathematics and Computer Science Department. The team collectively has expertise in Human Biology, Immunology, Mathematics, and Neurobiology. Research Assistants for the study are undergraduate students Lindsay Branch (Biology) and Charmaine Mavhiya (Mathematics).
According to the team's research webpage, "shortness of breath, or dyspnea, is a commonly reported symptom in dysautonomia patients. Several studies have shown that anywhere from 25% to 75% of dysautonomia experience this symptom, with different severity. Shortness of breath can be an isolating factor and can have an impact on the quality of life of dysautonomia patients. The mechanisms underlying shortness of breath in dysautonomia are complex and have been described in the literature. However, no large-scale systematic patient reported outcome study on shortness of breath in dysautonomia has been conducted to date."
Study aims are threefold: 1) Determine what percentage of people affected by dysautonomia experience shortness of breath, 2) Establish if shortness of breath significantly impacts quality of life of dysautonomia patients, and 3) Identify which interventions dysautonomia patients find helpful for shortness of breath. This study has UNCP Institutional Review Board approval and relies on patient participation by way of secure, online surveys.
We have established partnerships with several non-profit organizations that aim to advocate for dysautonomia patients and to connect the dysautonomia patient population with the biomedical community. Our goals are to improve our understanding of processes implicated in autonomic dysfunction and to improve quality of life of dysautonomia patients. Among our partners are: The Dysautonomia Project, Dysautonomia Support Network, Dysautonomia Information Network, Dysautonomia Louisiana, Los Angeles Dysautonomia Network, and Standing Up To POTS. We are also partnering with leaders in in the broad field of connective tissue diseases (CTD), which are often comorbid with dysautonomia. We are especially lucky to have established a collaboration Mr. Jon Rodis - President of the Connective Tissue Coalition.