Patient educator and advocate Ellen Schnakenberg became proactive after being told her health situation was too complicated, and her chronic Migraines were *hopeless.*
Because her kids also suffered very early with Migraine and other similar health issues, she knew she couldn’t give up looking for answers. She took to the computer and, using knowledge accumulated from decades working with veterinary medicine, began researching. Along the way she received help from other patients that contributed to the change in her entire family’s lives.
She now works and volunteers helping patients herself in many different communities, both online and off, as a way of paying forward what was given to her years ago.
Her work was noticed, and she was offered a position with a new site for health advocates and activists, called WEGO Health, where she remained for several years. She has been active in other communities and sites as an advocate and community moderator, and is thrilled now to be a new health guide in HealthCentral’s Migraine community.
Staying current with the latest research and thought leaders in Migraine and headache is vital so she can help patients understand what their doctors are talking about, and Ellen researches journal articles and regularly attends continuing medical education conferences and scientific meetings alongside headache and Migraine specialists and researchers.
Experience and affiliations:
Ellen is the Chair-elect of the new American Headache Society® (AHS) patient organization, The American Headache and Migraine Association (AHMA). She also works with specialists and advocates by participating as a member of the (AHS) Committee for Headache Education (ACHE). ACHE is sponsored and directed by AHS which is a professional society of health care providers dedicated to the study and treatment of headache and face pain.
Among other organizations and groups, she is also an ambassador for the US Pain Foundation, a member of the Sjogren’s Syndrome Foundation and an active participant of the Heartland chapter of the Lupus Foundation of America.
Ellen was recently chosen as one of the top ten online Migraine and headache bloggers, and has been a Health Activist Award finalist in the categories of Health Activist Hero and Best in Show: Facebook. She enjoys working closely with other advocates on projects that create awareness and change within their communities, and helps plan projects for, and participates in National Migraine and Headache Awareness Month each June.
Though never considering herself politically active, Ellen has spoken with legislators at the state and national level, advocating for desperately needed research and better health care for Migraine and headache, and lupus patients. Nominated in 2013 by the physician's organization, the American Headache Society, Ellen was able to make a tangible difference for patients when she participated in the Department of Defense’s 2013 Peer Reviewed Medical Program as the consumer reviewer of many research applications under the Department of the Army.
She designed and produced a year long educational community video project organizing over 100 Migraine patients. It’s called “The Faces of Migraine” and was released during Migraine and Headache Awareness Month, June 2013, and re-released to support the 36 Million Migraine Campaign in July 2013. It has received acclaim from Migraine and headache specialists as well as patients and advocates.
Posts from Ellen can be found on many blogs and social media platforms including:
Faces of Migraine Disease Video Project
Staying current in her other health conditions is important too, as is advocating and helping other patients learn about their illnesses. Ellen’s mixture of comorbid conditions is unique and offers her audience an opportunity to learn about other issues that may be impacting their Migraine and headache management. To this end, Ellen has been active in these and other communities:
• Autoimmune disease
• Sjogren’s syndrome
• Graves’ disease
• Hashimoto’s thyroiditis
• Dystonia and tardive reactions
• Facial pain
• GERD and LPR (types of reflux)
• Women’s health
She has been featured in a summer 2013 edition of the Lupus Foundation of America’s magazine “Lupus Now” discussing work-around tricks for severe UV light sensitivity.
Staying active in her local community is important to Ellen, volunteering and training when she is able as a Community Emergency Response Team (CERT) trainer, as a founding member of the local search and rescue team, and as a Medical Emergency Responder.
Ellen is a patient first and an advocate – always putting patients FIRST. She has been a chronic Migraineur since the mid 1990’s, and has the same skin in the game as every other patient. Despite her inability to work outside her home office, she chooses never to accept financial compensation from pharmaceutical or device companies or patients.
"Living with chronic illness is the challenge of a lifetime for me. It’s not easy being a proactive team member in my health care – it takes work when you don’t feel well, and sometimes some creative work-arounds. Due in great part to the internet, health care as we know it is changing by the minute, and doing so in the favor of the patient. Education, support and patience are the keys to living a purposeful life instead of simply surviving chronic illness, and are available to those who seek them. These keys have become my passion to pass along to others so they can become active partners in their health care instead of passive participants. The saying goes: "Success is a little like wrestling a gorilla. You do not quit when you're tired -You quit when the gorilla is tired." -Robert Strauss My goal: That each and every patient finds a place for Hope so deep in their souls, that we never, ever lose another patient to despair and desperation."