SCI awareness month

September is national SCI Awareness Month.

According to the National Spinal Cord Injury Statistical Center’s “Facts and Figures at a Glance 2020”, there are approximately 296,000 Americans currently living with SCI, and about 17,900 new cases each year.

People with SCI can live full, productive, and rewarding lives. To do so, it’s essential that they have access to the resources they need, including medical care, quality jobs, education, and mental health treatment.

It’s vital we continue to have informed, resourceful, and productive conversations about how to improve policies and resources for people with disabilities. These conversations help spark ideas and increase support around the discovery of effective treatments and therapies for SCI.

The History of SCI Awareness Month

To raise awareness about this important issue, in 2018 U.S. Senate Resolution 533 recognized the month of September as National Spinal Cord Injury Awareness Month.

This resolution allows the Senate to “continue to support research to find better treatments, therapies, and a cure for paralysis [as well as] support clinical trials for new therapies that offer promise and hope to those persons living with paralysis”. 

Resources for People with SCI

The United Spinal Association provides a comprehensive list of resources for people with SCI, including information about: 

  • Education
  • Employment
  • Family and Personal Relationships
  • Advocacy
  • SCI Directories
  • Resources for Caregivers
  • Financial Assistance
  • Housing 
  • Insurance

Ways to Raise Awareness About National SCI Month

We can all do our part to help raise awareness about SCI, and it doesn’t only need to be during September! Some of the ways to help include:

  • Talk About Spinal Cord Injury: Even if it isn’t feasible to raise funds or host an event, simply talking about SCI, the need for further funding for research, and the resources available to help people and their families makes a difference.
  • Wear a Spinal Cord Injury Awareness Ribbon: The spinal cord injury ribbon color is lime green, and wearing a vibrant green ribbon can prompt people to ask questions, enabling you to educate and share information to expand awareness of spinal cord injuries and the need for resources, research, and funding.
  • Raise Funds for Research and Spinal Cord Injury Awareness Efforts: Start an online fundraiser or crowdfunding campaign for organizations like The Miami Project or the United Spinal Association. The idea of a campaign is to raise funds, but also to create more awareness about the pervasiveness of SCI as well as educate on resources that are available to help.
  • Host a Community Event: There are many community events you can host to raise awareness about spinal cord injuries. Ideas include sponsoring a walk/5k or hosting an educational session at a local school or local library (virtually or in person).
  • Share Your Stories: if you or a loved one have personal experience with SCI, by sharing your stories you help people understand the challenges and opportunities people with SCI face every day.
  • Ask Questions: If you don’t have direct experience with SCI but would like to learn more, ask questions. Do research on ways you can help, whether it’s through donating money and/or time, helping out a friend or neighbor, or even becoming more educated about SCI in order to be of service to someone who needs assistance. 

Three Inspiring Stories about People with SCI

Hidden Blessings: Daquan’s Story:

Image credit/source: Memorial Hermann Spinal Cord Injury Recovery: The Will to Walk Again (memorialhermann.org)

Daquan was a typical teenager working out with friends at a gym in his hometown of Humble, Texas. On the way home from the gym they had a car accident, causing the car to flip five times. Everyone but Daquan walked away from the accident. He suffered a fractured skull and a T6 incomplete spinal cord injury that caused paralysis from his waist to his toes. He was told he may never walk again.

“The extent to which Daquan would recover was very much in question,” says Dr. Matthew Davis, clinical medical director, Spinal Cord Injury Program, TIRR Memorial Hermann. “Each spinal cord injury is different and I’ve seen enough of them to know that the outcomes can vary so you never want to take away a patient’s hope.”

After three weeks in intensive care and a month of intensive rehabilitation. Daquan was fitted with a brace to support his spine and he was able to stand for the first time since the accident.

With more intensive physical therapy, and even without feeling from the waist down, Daquan was eventually able to take a few steps.

“It sounds kind of crazy but the accident was really a blessing in disguise because I was heading down the wrong path in life,” says Daquan. “The accident and everything that has happened since, has helped me to become a better person.”

As a senior, Daquan competed on the TIRR Memorial Hermann Junior Hotwheels team, and helped lead the team to a National Wheelchair Basketball Association championship in Louisville, Kentucky.

At graduation, and despite never regaining feeling from the waist down, with the help of the back brace and physical therapy Daquan was able to walk across the stage to get his diploma. 

He is now in college studying to become an occupational therapist. He volunteers regularly at TIRR Memorial Hermann, donating his time at the place that helped him start moving forward again.

The Champion: Michelle’s Story:

Image Credit/Link: Jefferson Health Michelle Konkoly – Magee Rehabilitation (jeffersonhealth.org)

As a freshman, Division One swimmer, and pre-med student at Georgetown University, Michelle could never have foreseen that an accidental five-story fall from a dorm window would shatter her L2 vertebra, along with several other bones.

The prognosis for walking again was hopeful, with a lot of work, but permanent weakness in her legs led her treatment team to tell her competitive swimming was likely off the table forever. She attempted to rejoin the school’s swim team, but wasn’t able to compete with the other able-bodied swimmers. 

Not to be deterred, Michelle set a goal to compete in the Paralympic Games.

She tried out for the 2012 Paralympic swim team, but didn’t make it. Despite this crushing disappointment. Michelle said: 

For the past year, my injury has been the most important thing about me. It was all anyone really wanted to talk about. Suddenly, I found myself in a situation where my disability was just a small aspect of my larger identity as an athlete … I was with athletes who were dealing with the everyday challenges of disabilities while also training to become the best in the world.”

She tried out in 2014 and this time made the National Team and set her sights on the Paralympics in Rio. She trained for the next year and a half, swimming eight times/week with her coach. At the Paralympic trials in June 2016, she smashed a world record twice and swam her personal best in all her events. She was now an official Paralympian and member of Team USA.

At the Paralympic games in Rio Michelle won two gold, one silver, and one bronze medal. Her hard work and support of family and friends allowed her to live out her dream.

Her experience in hospitals and rehabilitation centers inspired Michelle to become a doctor to help others. She is now 29 years old and over halfway through medical school. Her goal? To work with other people who have disabilities. 

A Grateful Heart: Lee’s Story:

Image link/credit: United Spinal Association Recovering from Spinal Cord Injury, Never Give Up Hope – United Spinal Association

During a bike ride in Colorado in 2013, Lee rode off the trail and down a steep hill where he was thrown from his bike, landing on his head and shoulders. 

He later discovered that he had bruised his spinal cord at C3 and C4 and was paralyzed from the neck down. After months of hard work at an inpatient rehabilitation facility, Lee experienced several important milestones, including the ability to use a power wheelchair, have bowel movements on his own, and the removal of his feeding tube. Eventually, he was even able to take some assisted steps on his own.

When asked about his coping mechanisms, Lee said: 

Being aware of my gratitude and expressing my gratitude was one very powerful and effective coping mechanism – from the first moments after my accident. Being dependent on staff for everything made me feel very vulnerable. I was and am so grateful for how the staff always treated me with dignity and respect and most of all made me laugh. Humor was another very powerful and effective coping mechanism.”

When things become difficult physically, mentally, or emotionally, Lee reaches out for help. As a Licensed Clinical Social Worker, he knows he needs to surround himself with resources and a supportive community.  His advice to others newly facing SCI is this: 

“If you are just starting your rehabilitation – then I can almost guarantee you things are going to get better – things will get easier. This is not just my opinion. This is what the research and literature reports. If it doesn’t get better and/or doesn’t get easier – then you need to do something about it. Find a support group. Surround yourself with supportive – positive – funny – people. Don’t be afraid to ask for some help.”

 

Join the Thrive Community!

We’ve gathered a number of inspiring individuals with disabilities in our very own Thrive Community! The Thrive Community Facebook Group is a private space for any person with a disability, as well as caregivers and healthcare providers that touch their lives.

Our purpose is to provide a safe, educational space for group members to ask every question, connect with their peers, and empower each other through communication and connection. Our conversations are led by incredible individuals who themselves are living and thriving.

For more enlightening resources, information, and discussion, join the Enemeez® Thrive Community today!

Disclaimer: The material contained is for reference purposes only. Quest Products, LLC does not assume responsibility for patient care. Consult a physician prior to use. Copyright 2021 Quest Products, LLC.

 

Sources: 

https://www.nscisc.uab.edu/Public/Facts%20and%20Figures%20-%202021.pdf

Join Us in Raising Spinal Cord Injury Awareness – United Spinal Association

September is National Spinal Cord Injury Awareness Month – The Miami Project

United Spinal Resource Center – United Spinal Association

Spinal Cord Injury Recovery: The Will to Walk Again (memorialhermann.org)

Michelle Konkoly – Magee Rehabilitation (jeffersonhealth.org)

Recovering from Spinal Cord Injury, Never Give Up Hope – United Spinal Association