Raising the Voice of Young Survivors



Amy Edmunds

It's not unusual for me to ask questions. Curiosity has been my lifelong companion. As a child, curiosity once earned me a set of World Book Encyclopedias for questioning why woodpeckers peck wood. As an adult, curiosity prompted foreign travels across Europe, Africa, Asia, North America, South America and the Caribbean.

So it’s no surprise that I was also curious in 2002, after experiencing an ischemic stroke at age 45. I was determined to understand why it occurred. I enrolled in graduate school the same year and chose a research focus on understanding stroke among young adults.

As a student, I was curious about why there were so few publications about the American young-stroke experience. I wondered why there was no advocacy voice for my new identity. And I questioned the lack of social support and recovery resources for young survivors and their families. This inspired me to found YoungStroke Inc., a nonprofit patient advocacy organization. YoungStroke now benefits those like me, young adults who experienced their first stroke before age 65.

Before my stroke, I ate a healthy diet. I often competed in 5K races and had no family history to suggest I was at risk. Yet, I had a stroke following an outpatient surgical procedure.

The stroke affected my memory. After a week in the hospital, I was sent home with a suspended driver’s license pending further vision exams. For me, my dependence on others during my recovery was a difficult transition. During this time, I visited several support groups. But I was depressed to observe I was too often the youngest survivor in the room. Even more, their conversations did not address my interests in career, driving or relationships.

Because my memory loss includes the moment of the stroke, I rely on the memory of my mother for the events of that day. In short, I do not know how the stroke felt. For the first few years, I was frightened every time I had a headache or any part of my body responded in an odd way. And, it has taken me years to relax.

My stroke altered the way I view myself. I was shaken by the potential of a second stroke. The stroke altered my family’s view of me, too. Since then, I routinely receive daily phone checks from my mother or brother … just to make sure I’m okay. Because I share their concern, I have grown to appreciate their outreach.

For a time, I also felt my invisible disability to be minor compared to those survivors with more obvious physical disabilities. But I soon realized these situations offered an opportunity for me to become the missing voice.

So, I began to build on my strength for public speaking. I found my voice as an active volunteer for the American Heart Association/American Stroke Association (AHA/ASA). Over the years, I have participated in many You’re the Cure advocacy trainings. Collectively, these trainings helped me to refine my message. I became comfortable presenting in the community as well as before state legislatures and Congress.

Today I use my voice to emphasize the role of all members of the community to recognize and respond quickly to stroke warning signs. Getting help quickly often depends upon a bystander recognizing the signs and calling 911. For me, this person was my mother. I was totally unaware I was experiencing a stroke as my speech was confused and I experienced temporary blindness.

Getting help at the first sign of stroke is crucial to helping save lives. About 56 percent of Americans cannot name the most common warning sign. Many of these are members of racial/ethnic groups who are at highest risk. This knowledge gap can have deadly consequences. Ignorance of stroke symptoms means many young stroke patients may be misdiagnosed or are delayed in getting access to care.

I also use my voice to spread the word that all stroke survivors are not the same. I help others understand the differences between the needs of young adult survivors and geriatric patients. Stroke may be particularly devastating financially and physically for young survivors, as they face overwhelming challenges to regain independence and return to their jobs and family responsibilities.

I encourage young survivors to have annual assessments with their healthcare team to maximize rehabilitation planning. I challenge respite policies that exclude caregivers of young stroke survivors. Finally, I champion more research and data collection about young stroke.

I was honored to have been invited to address the inaugural Rally for Medical Research in Washington, D.C. in 2013 by the American Stroke Association. This event cast YoungStroke Inc. onto a national platform with full-page ads in Politico and Rollcall.

Last year, I was elected to the Board of Directors of the World Stroke Organization. In this role, I globally represent stroke support organizations. I am also one of two stroke survivors who serve in this capacity. The other is young stroke survivor Patrice Lindsay of Canada. Our images were among those used to promote World Stroke Day last year.

Now 13 years post-stroke, my childhood curiosity remains as steadfast as my desire to voice the unmet needs of young survivors and their caregivers. See below to find out how you can get involved with YoungStroke.


YoungStroke 2015

Survivors Leigh Kost (I) and Tracie-Ann Jessamy at YoungStroke 2015

In June 2015, YoungStroke launched the first international conference to exclusively address young stroke in Jacksonville, Florida. This unique scientific conference brought stroke patients together with a wide array of healthcare professionals. Neurologists, therapist and other stroke specialists engaged with patients and each other. Its theme, Visible for Community Change, challenged attendees to be visible in their hometowns to raise awareness. "YoungStroke 2015 should mark the start of a new era," Bo Norrving, the immediate past president of the WSO, said during his keynote address. YoungStroke 2015 was endorsed by the WSO and sponsored in part by Mayo Clinic.

"I’ve heard more ideas and research geared towards stroke survivors in my age group in the first day of the conference than I have in the 2 years since my stroke," said survivor Nate Sankary of New Jersey.

Young survivor Toni Hickman of Houston entertained with songs from her album Unbroken, which included lyrics about her stroke experience. Performing artist Ron Daise also debuted an original song titled "People Gotta Know."

As a next step, YoungStroke’s Fall Retreat is scheduled October 16, 2015, at the Sea Trail Convention in Sunset Beach, North Carolina. The retreat will build on the momentum and collaborative spirit ignited at the June event to create more research projects and publications related to young stroke. As before, survivors and caregivers are encouraged to come share perspectives.

YoungStroke 2016 returns to Jacksonville next year June 25-27. Keynotes include Walter Koroshetz, M.D., director of National Institutes of Health/National Institutes of Neurological Disorders & Stroke (NIH/NINDS), and Jon Barrick, president of the Stroke Alliance for Europe and CEO of the Stroke Foundation of the United Kingdom. YoungStroke 2016 promises to deliver innovative opportunities for survivor and caregiver participation.


Get Involved with YoungStroke

YoungStroke invited the young stroke community to build upon its conference momentum during a kickoff rally featuring Toni Hickman on the National Mall in Washington, D.C., during August in conjunction with "Music at the Monument."

To raise awareness and build community among young survivors across the country, you are invited to take part in any of the upcoming scheduled rallies prior to YoungStroke 2016. Find an event near you and learn more about YoungStroke.


Look Forward to More

In 2016, Stroke Connection will collaborate with YoungStroke Inc. to bring our readers several articles that focus on topics of specific interest to young survivors and their families. Email us and let us know what topics interest you the most!


YoungStroke Inc.

YoungStroke is a strategic partner with Million Hearts and the National Forum for Heart Disease & Stroke Prevention. It also serves as an information resource for National Institutes of Health/National Institute of Neurological Disorders & Stroke.

This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.

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Stroke Rehabilitation

Making the Best Decisions at Discharge After Stroke

The type of rehabilitation and support systems a survivor receives at discharge can strongly influence health outcomes and recovery. In this, the first part of a two-part series on stroke rehab, we offer guidance for the decision-making process required when it’s time to leave the hospital.

What to Expect from Outpatient Rehab

After stroke, about two-thirds of survivors receive some type of rehabilitation. Outpatient therapy may consist of Several types of therapy. Whether a patient is referred to inpatient or outpatient therapy depends on the level of medical care required.

What to Expect in Stroke Rehab

Following a stroke, about two-thirds of survivors receive some type rehabilitation. In this second of our two-part series, we want to alleviate some of the mystery, fear and anxiety around the inpatient rehab part of the stroke recovery journey.
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AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Caregiver Guide to Stroke

The Caregiver Guide to Stroke is meant to help caregivers better navigate the recovery process and the financial and social implications of a stroke.

Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try

Tips for Daily Living Library

This volunteer-powered library gathers tips and ideas from stroke survivors, caregivers and healthcare professionals all over the country who’ve created or discovered adaptive and often innovative ways to get things done!

Stroke Family Warmline

The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear.

Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.
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Stroke & Parts of the Brain

When Stroke Affects the Occipital Lobe

Our occipital lobe, the smallest of the four lobes of the cerebral cortex, controls how we visually interpret our world.

When Stroke Affects the Cerebellum

The cerebellum contains 80 percent of our neurons. Its job seems to be to make things better. We talked with neuroscientist Jeremy Schmahmann about how stroke affects the “little brain.”

When Stroke Affects the Parietal Lobe

The parietal lobe helps us make sense of sensory information, like where our bodies and body parts are in space, our sense of touch, and the part of our vision that deals with the location of objects.

When Stroke Affects the Frontal Lobe

Of the four lobes that make up the cerebral cortex, the frontal lobe is the largest. It plays a huge role in many of the functions that make us human — memory, language, movement, judgment, abstract thinking.

When Stroke Affects the Temporal Lobe

The temporal lobe has several functions, mainly involved with memory, perception and language.

When Stroke Affects the Brain Stem

The brain stem serves as a bridge in the nervous system. It sits at the top of the spinal column in the center of the brain. When a stroke happens there, it can cause a few different deficits and, in the most severe cases, can lead to locked-in syndrome.

When Stroke Affects the Thalamus

The thalamus can be thought of as a "relay station," receiving signals from the brain’s outer regions (cerebral cortex), interpreting them, then sending them to other areas of the brain to complete their job.
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Departments

Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

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Everyday Survival

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Life At The Curb

A unique perspective on survival by comedian and stroke survivor John Kawie.

Simple Cooking

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Helping Others Understand

Stroke affects people differently and many of the effects of stroke can be complicated. Helping friends and family understand how a stroke is affecting a survivor can help everyone involved.

Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!