Published: 09/10/2018 Tags: The Ehlers-Danlos Society News

The Ehlers-Danlos Society recognizes Dysautonomia Awareness Month

Patients, caregivers, medical professionals, and patient organizations will collaborate throughout the month of October to educate their communities about dysautonomia, a complex, misunderstood group of conditions caused by abnormalities in the autonomic nervous system.

According to Dysautonomia International, “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.”

While the co-occurrence of EDS and postural orthostatic tachycardia syndrome (POTS) is widely recognized, three other dysautonomias have been identified as comorbidities of the Ehlers-Danlos syndromes; neurally mediated hypotension (NMH), also referred to as vaso-vagal syncope or neuro-cardiogenic syncope, orthostatic hypotension (OH) or delayed orthostatic hypotension, and orthostatic intolerance (OI). The exact prevalence of these comorbidities in the EDS population is unknown. Dysautonomias can cause a wide range of symptoms in EDS patients, such as tachycardia, hypotension, gastrointestinal dysmotility, disturbed bladder function, and sweating regulation.

“As dysautonomia affects many of those living with EDS and HSD, The Ehlers-Danlos Society Is committed to advancing dysautonomia research, education, and awareness, through our work with the EDS International Consortium’s Autonomic Dysfunction Working Group and the EDS Comorbidity Coalition,” states Dr. Alan Hakim, Director of Education for the Ehlers-Danlos Society.

“Dysautonomias produce a constellation of symptoms that range from mild to severely debilitating, and can greatly impact overall health and quality of life. Yet, there is still a lot we don’t know about these conditions, as well as their relation to EDS. The Ehlers-Danlos Society is proud of our collaborative work with some of the most brilliant minds in dysautonomia research as we seek answers and solutions for our community.” added Lara Bloom, International Executive Director of the Ehlers-Danlos Society.

Dysautonomia International is hosting a variety of Awareness and Advocacy events throughout the month in an effort to #ShineALightOnDysautonomia. Check out the full list of these events here.

More info:

What is Dysautonomia?

Cardiovascular Autonomic Dysfunction in Ehlers–Danlos Syndrome—Hypermobile Type

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Posts

View all Posts

Sign up to The Ehlers-Danlos Society bi-weekly newsletter