Fall is a busy time of the year for activists fighting for awareness of various conditions. During the month of October, people become louder with their voices about Breast Cancer, Down Syndrome, SIDS, Domestic Violence, and many other awareness causes. October is also Dysautonomia Awareness month, and is a cause that is close to my heart.
I fight for awareness for this unknown medical condition not just in October, but year round because when I was twenty one, my life changed drastically because of Dysautonomia. In an instant my life went from a normal college student, to one who was fighting for her life.
Being diagnosed was not easy. After seeing around 20 doctors, I was relieved when one smart doctor at Vanderbilt University Medical Center in Tennessee diagnosed me with POTS or Postural Orthostatic Tachycardia Syndrome. This condition is a form of Dysautonomia which is an umbrella term used to describe autonomic nervous system disorders. The autonomic nervous system regulates all “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, breathing, digestion, and temperature control. In POTS patients, the autonomic nervous system is severely out of whack, which causes the debilitating and far-ranging symptoms that plague myself and many others. Majority of the symptoms happen internally and can not be seen by the naked eye, making this terrible condition not well known.
A huge weight was lifted off of me and my family’s shoulders to finally have a diagnosis, but another weight was added on when we learned that POTS is a chronic condition, and there was no cure. I remember thinking that though I was alive, I had lost my life. I mourned for the person I once was and the life I envisioned for myself. I thought that in my twenties I would be traveling the world, have a rewarding career, and taking all kinds of risks; not being house bound many days, living in constant pain and dizziness, and always depending on my family for care. My new ‘normal’ has been difficult to accept, especially when I am constantly doubted by doctors because they are not educated about this invisible illness.
It is extremely frustrating going to doctor after doctor and getting blank stares when you tell them you have POTS. There is a huge lack of awareness in the medical community about Dysautonomia which is puzzling because there are more than 70 million people worldwide who suffer from this medical condition. It is actually more common than MS and Parkinson’s combined, yet Dysaustonomia is rarely diagnosed. We, the patients and our caregivers, are pleading for this chronic debilitating condition to be taught in further detail in medical school to lessen people’s suffering.
We are constantly made to feel like it is all in our head’s when that is not the case at all.
The only way to change our stories is to stand tall and create a powerful wall of awareness. We need to be loud as hell and scream out our stories so the public and medical community will hear us. This will help make a Dysautonomia known and within time a cure will be found.
I have teamed up with Dysautonomia International to help raise funds to find a cure. They are a volunteer-led 501(c)(3) non-profit organization, that advocates, educates and has research programs in place studying to find a cure.
For the month of October, I am hosting an online fundraiser through Crowdrise to help raise funds to support Dysautonomia International find a cure. Every dollar donated goes directly to fund their important programmatic work.
The path to a cure for Dysautonomia starts with awareness.
If you would like to learn more or print handouts for teachers and doctors, you can visit: DysautonomiaInternational.org