Honoring National Invisible Chronic Illness Awareness Week
National Invisible Chronic Illness Awareness Week starts today – September 14th, 2009. The purpose is to increase awareness of the fact that about 1 in 2 people have a chronic illness, many of these “invisible”. The term invisible illness refers to any medical condition that is not outwardly visible to others, even health care professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer.
One “invisible” illness that you may not have heard of is Dysautonomia. People with Dysautonomia come from all age groups and walks of life. One form of Dysautonomia, known as postural orthostatic tachycardia syndrome (POTS) is even suspected to affect 1 in 100 adolescents. As a teen, I was diagnosed with Neurally Mediated Hypotension (NMH), another Dysautonomic disorder. Although I didn’t look sick on the outside, my body was sick on the inside, and it was very hard to live a normal teenage life, especially since my friends (and even some doctors) couldn’t see that anything was wrong, and didn’t believe and/or understand it.
Although I’ve grown out of most of the NMH symptoms that affected me as a teen, I still consider myself part of the Dysautonomia family. A great source of inspiration to me is Tyler Gurney, a 19 year old college student with Dysautonomia. Frustrated with the lack of information available, he started a non-profit organization dedicated to raising awareness about this syndrome. His incredible website includes info about learning to live and cope with Dysautonomia, a blog/vlog chronicling his challenges with the disorder, and more.
- For more information on National Invisible Chronic Illness Awareness Week, check out: Invisible Illness Week
- See Tyler’s site here: 12 More Pages
- For more information on Dysautonomia, visit: DYNA Kids