Stehanie Romer, HLHS, Hypoplastic Left Heart Syndrome, Congenital Heart Disease, CHD, Congenitl Heart Defect, disability housing, crisis, CHD Legacy, Advocate, Activist, Survivor, Warrior, Heart Warrior, Fontan, Crisis Cicatrix, Author, Podcast, Julie Mae Morefield, Nina Kash, Andrew Paukstitus, disability, Sarah Miller, Katie Greene, Caitlyn MacKay, Samantha Davis, Becca Atherton, Amanda Harper, Kayla, Tiffany Wasiuk, Jasmine Gilgosch, Amber McMillan

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Stehanie Romer, HLHS, Hypoplastic Left Heart Syndrome, Congenital Heart Disease, CHD, Congenitl Heart Defect, CHD Legacy, Advocate, Activist, Survivor, Warrior, Heart Warrior, Fontan

Who is Stephanie Romer?

I am a Congenital Heart Disease survivor who was born 34 years ago with one of the most terminal cases of CHD, called Hypoplastic Left Heart Syndrome, or HLHS. I am a CHD Patient Advocate of 13 years, an author, motivational speaker, and life coach who has made it my life's mission to turn all of the"I don't knows" of CHD into answers. 

I have dedicated the past 13 years of my life to researching and writing about the raw truth of CHD, survivors, families, spouses, siblings and doctors; focusing on the cognitive development i.e. mental health, affects of CHD.

If you are looking for a professional, reputable advocate, writer, or speaker whose topics of discussion has no bounds, I am your woman! 

 

A brief overview of my advocacy experience is as follows: 

I have been a writer for Heartbeat Magazine, Project Heart, and ACHA. I have spoken  at two Mended Little Hearts CHD conferences for CHD Parents, two CHD conferences at Johns Hopkins, one being on the Neuro-development of CHD children, and also on a Patient Panel for HLHS Survivors also at Johns Hopkins. I served on the CHD Advocacy Board at Johns Hopkins as well from 2016-2017.

 

In 2017 I was featured on the Tampa Bay Morning Show to discuss CHD. Also, in 2017 I created a Petition to put up signs and raise awareness about the neglect and abuse many of receive in Emergency Rooms. Following my petition, ACHA created a Webinar to raise more awareness about the importance of this subject!

 

I spent 2015-2016 creating and building CHD Legacy. 

CHD Legacy was created to provide a platform for mental health

education, inspiration, and healing through stories you can find at

Voices of CHD. It is a safe, non-judgmental, platform to share your

truth and be heard. A place you can talk and write about anything

– Taboo Subjects encouraged! You do not have to use your real

name. Through this platform, our united voices will create change,

and leave a legacy for the following generations of patients,

medical staff, and loved ones. The stories consist of Adult CHD

Patients only, both living and deceased.

 

The overwhelming amount of pain and torture so many of us have

lived, has been suppressed and swept under the rug in the CHD

community. Real change comes from the pain, as much as the joy

shared. Where is the research concerning these taboo subjects

that affect every single one of us? We are creating it, but only if we

speak up!

 

Topics such as: smoking, drinking, relationships, sex, pregnancies,

miscarriages, abortions, suicide, self-harm, drugs, PTSD,

depression, anxiety, abuse, divorce, complicated family dynamics,

keeping a job, building a career, college, partying, keeping up with

friends, bullying, and the list goes on.

Remaining silent about these topics, perpetuates them.

Remaining "pc" or trying to maintain a certain image does not

create change or bring awareness to many topics that keep us in

a state of suffering. That cycle of suffering is passed on for

generations if not adjusted or changed.

Silence and repression does not help the current and future CHD

children, teens, adults, or families. We all share our stories to raise

awareness to help the CHD community to have what we never had -

answers! 

 

Please support these brave contributors to the Voices of CHD

blog by reading and sharing their stories! Their transparency

reveals some of the true struggles we fight on the front lines of

the CHD battle. We are pioneers with no one before us speaking

out about many of these topics.

If CHD Legacy has helped you, please share with us how we have helped you!

 

To learn more about me, check out my blog that is updated

periodically regarding various subjects called The Elephant

I am currently writing my first book about surviving my life with

one of the most terminal forms of CHD, while growing up 

in an abusive home.

As of 2019 I am a Patient Advocate and facilitating my own

Adult CHD Group at St. Joseph's Hospital in Tampa, FL. If you

are interested in learning more please contact me. The group

begins September 11, 2019!

I had a You Tube channel for many years sharing my experiences

being an adult with CHD as well as interviewing other CHD Adults.

I have retired from being on You Tube, as I am too busy expanding

the CHD Legacy empire in other ways.

 

I have many accomplishments and an abundance of knowledge

and experience I have accumulated over the past 13 years

researching my own illness, and interviewing over 100 CHD

survivors, as well as medical professionals, siblings, spouses, and

families.

Email (below) for any of the following inquires:

 

o   Interviews

o   Content Writer

o   Documentary

o   Speaking Engagements

o   Brand Ambassador

o   To sign up to join the Tampa Adult CHD Group

o   To be notified when my book is available online (print will be after the online release)

 

Contact - EMAIL: Stephanie@CHDLegacy.com

Click HERE to sign my Petition!