Interviews with individuals who are living with their best positive life despite the challenges of having a chronic illness.
How LaMondre Pough Turned His Situation Positive
LaMondre Pough, 47, was born with spinal muscular atrophy (SMA), and like many with SMA, he is dependent on the help of outside caregivers to come into his home to help him with basic life functioning. It’s a catch-22 for someone with SMA to have people in your home right now because they are at much greater risk to complications from Covid (decreased lung function can be a part of this progressive neuromuscular disease).
LaMondre has had more than one Covid exposure during the past year – each inadvertently from a caregiver. He has been outspoken about the importance of elevating vaccine access to individuals like himself, and his message is an important step for larger discussions about representation for those with smaller collective voices, aka rare diseases. LaMondre is fully vaccinated, but this is a topic that will not simply evaporate when this pandemic “moment” subsides. Rather, it has opened the door to some fundamental issues our nation needs to address.
LaMondre is an entrepreneur who is leading a movement of inclusion. In this episode you will learn about LaMondre's journey and how he is using his platform to bring positivity into the world no matter what situation is presented.
Follow LaMondre on social by clicking on the links below:
Twitter: @LaMondre_PoughInstagram: @lamondre_pYouTube: https://m.youtube.com/c/lamondrepough
How Jonathan Hill Turned His Situation Positive
Over the last year, creative play and games like Dungeons & Dragons (D&D) have made a resurgence, helping players escape a real life monster – the COVID-19 pandemic. Dungeon master Jonathan Hill has been using the iconic fantasy role-playing game his entire life as an escape from the mind-numbing challenges of his chronic health condition, severe hemophilia A.
Jonathan is sharing his story through another form of creative expression – a graphic novel – in the hopes of shedding light on the challenges that people living with hemophilia face. Blood of the Paladin details how Jonathan learned to accept and manage his bleeding disorder and hepatitis C diagnosis, and how he survived near death from HIV/AIDS during the 1980s blood contamination crisis. For Jonathan, D&D helped him learn to process life and death – both real and imagined. Through D&D, he found that he could be a hero exploring untold, unimagined worlds, while stuck in his hospital bed or at home.
More about Hemophilia A
Hemophilia A is a genetic bleeding disorder that prohibits blood from clotting normally. People with hemophilia are not only at risk of life-threatening external and internal bleeding following injuries, but have to learn from a young age to give themselves daily or weekly blood infusions.
Learn more about Jonathan here:
Blood of the PaladinBlood of the Paladin on Apple PodcastsJonathan Hill (@jonahill) / Twitter
How Chandler Turned Her Situation Positive
Chandler Crews has a passion for advocacy and social media. Born with the most common form of dwarfism, achondroplasia, she has been publicly sharing her journey for over a decade, gaining her a major online presence.
In 2010, she made the decision to undergo a series of limb lengthening surgeries. In a span of just four years, Chandler went from standing at 3’10” to over a foot taller at 4’11”.
Image from https://chandlercrews.com/category/self/achondroplasia/page/2/
This journey has led her to her career as a patient advocate, public speaker and communications professional. Today, she is the founder and president of The Chandler Project, a nonprofit patient-focused organization dedicated to providing education and resources on the latest research and development in pharmaceutical advancements and surgical treatment options for those affected by achondroplasia.
You can connect with Chandler by following her on Instagram & Twitter: @chancrews and Facebook: @ChandlerInBaltimore or by visiting www.chandlercrews.com and www.thechandlerproject.org.
How Angela Wrigglesworth Turned Her Situation Positive
Angela Wrigglesworth is a 21-year veteran elementary school teacher in Houston, Texas who has Type 2 spinal muscular atrophy (SMA). In this Situation Positive episode, Angela shares what it is like to live and work with SMA, how working remotely with COVID has affected her ability to teach, treatments available for SMA, how to maintain a social life with SMA, how to help people maintain a healthy and independent life.
Today, Angela serves on numerous charity advisory boards including the Camp for All Foundation and United Spinal Houston. Angela and her husband, Justin, recently launched a consulting company, Cobble + Stone Consulting, to help people with disabilities lead successful, independent lives.
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To learn more about Angela or spinal muscular atrophy please visit:
Cobble & Sone Consulting - Angela's consulting firmCure SMA SMA Foundation Muscular Dystrophy Association United Spinal Association
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Thank you for joining us at Situation Positive and we look forward to bringing you another inspirational story soon.