Importance of Dysautonomia Awareness Month and Its Significance Explained
In October, a significant event takes place in the medical community – Dysautonomia Awareness Month. This month-long observance, founded by Dysautonomia International in 2012, aims to improve education, support, and advocacy for people living with dysautonomia, a disorder of the autonomic nervous system (ANS).
Dysautonomia can be the result of genetics or underlying conditions such as diabetes, multiple sclerosis, celiac disease, and Parkinson's disease. The most common form of dysautonomia is Postural Orthostatic Tachycardia Syndrome (POTS), which affects over 70 million people worldwide, including about 1 out of every 100 teenagers in the United States.
People with dysautonomia may experience a wide range of symptoms, including fatigue, nausea, impaired vision, heart palpitations, lightheadedness, difficulty standing, difficulty breathing, shortness of breath, gastrointestinal symptoms, and abnormal blood pressure. Symptoms of POTS specifically include headaches, fainting, sweating, dizziness, chest pain, blurred vision, heart palpitations, extreme tiredness, shortness of breath, brain fog or memory problems, and gastrointestinal symptoms such as diarrhea, indigestion, and stomach aches.
Managing symptoms of POTS can be challenging, but effective strategies include drinking plenty of fluids, trying gentle exercises, avoiding drinking too much caffeine or alcohol, not standing for too long, not getting up too quickly from lying down, raising the head of the bed, and consulting with a healthcare professional.
During Dysautonomia Awareness Month, patients and advocates can get involved in various ways. Joining virtual support groups hosted by organisations such as the Dysautonomia Support Network (DSN) provides a platform for sharing experiences and mutual support. Participating in specialized support groups, including teen-focused groups for ages 13-19, offered by organisations like LADN, helps younger patients connect and advocate.
Engaging with advocacy and education programs, like the EDS ECHO Advocacy program, equips advocates with tools for self-advocacy, fundraising, social media outreach, and starting support groups related to dysautonomia and related conditions. Sharing personal stories through support groups, blogs, panel discussions, and social media helps raise awareness, reduce stigma, and inspire systemic change.
Participating in community events such as Dysautonomia Awareness illuminations or other scheduled awareness activities hosted by local government or organisations provides public visibility to the condition. Advocating for research and better care by joining or forming patient advisory councils, participating in clinical trials if eligible, and engaging with policymakers to promote funding and more inclusive studies, especially for underrepresented populations, is crucial in driving progress.
These combined efforts help build community, educate the public, improve patient care, and drive research progress during Dysautonomia Awareness Month. By raising awareness and supporting those affected by dysautonomia, we can work towards a future where this little-known disorder is better understood and managed.
- Besides dysautonomia, other autoimmune disorders, chronic diseases, and neurological disorders can impact an individual's health and wellness, mental health, and immune system.
- The autonomic nervous system, which plays a vital role in regulating bodily functions, is often affected in cases of dysautonomia, leading to a range of medical conditions like Postural Orthostatic Tachycardia Syndrome (POTS).
- Science and medical research continually work towards understanding the root causes and developing effective treatments for complex conditions like dysautonomia, multiple sclerosis, celiac disease, Parkinson's disease, and other chronic diseases.
- In addition to taking care of POTS-specific symptoms, healthcare professionals might recommend strategies like drinking plenty of fluids, exercise, and medication to manage other nervous system disorders or related chronic diseases.
- To progress in understanding and managing these conditions, individuals can participate in various ways during Dysautonomia Awareness Month, such as joining support groups, engaging in advocacy programs, and advocating for better research and care.
