Home » Education » Los Angeles Teen With Dysautonomia Makes It Her Mission To Spread Awareness

With the help of her parents, she is reaching out to get her local elected officials to join with governing bodies around the world and proclaim October as Dysautonomia Awareness Month. The average patient experiences a 4-year delay period in getting diagnosed, so she hopes that with this campaign, the symptoms of Dysautonomia are recognized and diagnosed earlier.

Los Angeles, CA – Oct 19th, 2021, Dysautonomia is an umbrella term used to describe various medical conditions that cause a malfunction of the autonomic nervous system. The autonomic nervous system controls the “automatic” functions of the body that people do not consciously think about, such as heart rate, blood pressure, digestion, absorption, and more. People living with different forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rate, malnutrition, fatigue, and other symptoms.

Although many have never heard of Dysautonomia, this medical condition affects 1-3 million Americans. In fact, Mayo Clinic researchers estimate 1-100 teens develop POTS before adulthood. POTS, Postural orthostatic tachycardia syndrome is one of the most common forms of Dysautonomia.

It is vitally important to bring this condition, Dysautonomia, to the forefront because not only do many patients go undiagnosed, but they most commonly get misdiagnosed, which can add to their problems. Sara, the brave teen that is spearheading this campaign has a heralding story of her own.

She has a genetic disorder called hypermobile Ehler’s Danlos Syndrome (hEDS) which is a connective tissue disorder and many patients with hEDS also have dysautonomia. The autonomic nervous system controls the G.I. tract and dysfunction of these nerves can cause weight loss, malnutrition, nausea, vomiting and even gastroparesis.

Sara’s mother was recently quoted as saying, “When my daughter was 12-13 years old, her school thought her symptoms were an eating disorder. She was a bright, kind student with a disability, but they would not accept her disability and the school insisted that all of her symptoms were an eating disorder and only an eating disorder. Our family went through an extremely difficult time during this period because it felt like there was such little understanding of Dysautonomia. Even after my daughter received an official diagnosis, they still did not believe us and got child services involved.”

She went on to say, “I couldn’t help but wonder, if there was more awareness of this disease, could things have been different the first time?”

Sara, the brave teen that is spearheading her own local campaign was quoted as saying, “I am doing this to try to spread as much awareness about this disease as possible. I don’t want people to have to go through what I went through. Sometimes not knowing what you have is scarier than knowing, but what is even worse is when they don’t believe you.”  She went on to say, “I am contacting as many elected officials as possible to help spread awareness, and that includes sending out educational packets to local hospitals, doctors and schools, so that the symptoms of Dysautonomia are recognized and diagnosed earlier.”

To learn more about Dysautonomia, visit www.Dysautonomiainternaltional.org and https://www.ehlers-danlos.com. Get involved to help declare the month of October Dysautonomia Awareness Month globally and the world will be a better place.


Media Contact:

Dysautonomia International -LA
Los Angeles, CA USA