LAAZF Spearheads MI “Invisible Illness Awareness Week” Resolution

Written by Katie Jaskolski on . Posted in News

MAY 25-31, 2014 ADOPTED AS INVISIBLE ILLNESS AWARENESS WEEK IN MICHIGAN, THEMED “EVERYBODY KNOWS SOMEBODY”

The Michigan Senate has unanimously adopted a resolution formally declaring the week of May 25-31, 2014 as Invisible Illness Awareness Week in Michigan. The resolution was introduced by Senate Majority Leader, Randy Richardville of Monroe, MI, on Wednesday, May 21. Senator Richardville also introduced Katie Dama Jaskolski and Allie Dama, co-founders of Life as a Zebra Foundation, to the Senate floor.

Katie Dama Jaskolski, who has been diagnosed with Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS), and her sister Allie Dama, who has been diagnosed with polyarteritis nodosa vasculitis (PAN), started the Life as a Zebra Foundation after both women spent months with debilitating symptoms and running into dead-ends while searching for correct medical diagnoses. The sisters began blogging about their lives and journeys with these chronic illnesses, and growing popularity of the website led to the creation of the Life as a Zebra Foundation. The Life as a Zebra Foundation’s mission is to raise awareness for illnesses that are “invisible” to the outside world, as well as to raise funds for the research of these conditions.

Since 96% of people with chronic medical conditions live with a condition that is invisible, the 2014 Invisible Illness Awareness Week is themed “Everybody Knows Somebody” to reflect the widespread scope of the issue. The purpose of Invisible Illnesses Awareness Week is to raise awareness of invisible illnesses among the general public and medical community, while reducing the stigma surrounding these illnesses.

Dama Jaskolski commented, “The adoption of Invisible Illness Awareness Week in Michigan is an important step in getting dialogue started in the community. It will get people talking about what it’s like to live with an invisible illness, how friends and family members can support their loved ones, where someone can go to get accurate advice and information, and about the importance of earlier, more accurate diagnosis.” Dama added, “Not only will this week be about raising awareness, but it will serve to let others who are living with invisible illnesses know that they are not alone, and that there is hope and help out there.”

Individuals can participate in Invisible Illness Awareness Week by conducting outreach in their communities, providing information and resources, encouraging community members to model acceptance of individuals living with invisible illnesses, donating to invisible illness awareness organizations such as the Life as a Zebra Foundation, and/or joining Life as a Zebra Foundation’s planned social media campaign.

Dysautonomia

Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions.

Ehlers-Danlos Syndrome

Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen.

Vasculitis

Vasculitis is a family of rare and chronic autoimmune diseases, all characterized by the inflammation of blood vessels. There are more than 15 different vasculitis diseases, all of which can affect people of various ages, races, and genders.