The Dysautonomia Project

THE TOP SEVEN DYSAUTONOMIA SYMPTOMS ARE:

1. Difficulty standing still
2. Fatigue
3. Lightheadedness / Fainting
4. Nausea and other GI symptoms
5. Brain Fog or Mental Clouding
6. Palpitations or Chest Discomfort
7. Shortness of Breath or Difficulty Breathing

DID YOU KNOW...

• 70 million people worldwide suffer from Dysautonomia.  
• More than one in 100 teens have it.  
• It is more prevalent than Multiple Sclerosis or Parkinsons and it is considered one of the most misdiagnosed medical conditions of all time.  
• Dysautonomia can be a debilitating condition that is not rare - but rarely understood.  In fact, it is so misunderstood that 84% of patients are misdiagnosed with anxiety leading to an average diagnosis time of six years. 

Dysautonomia, pronounced “Dys-auto-NO-mia”, is an umbrella term for any malfunction of the autonomic system.  The autonomic nervous system controls all the functions we don’t consciously control such as blood pressure, heart rate, body temperature, digestion and more.  Symptoms are life altering and its debilitating impact on quality of life can be staggering.  Yet the worst part of having dysautonomia is the wide gap of understanding in the medical community leading patients to lose hope.  Fighting serious health issues is difficult enough on patients when much is known.  To add the extreme challenge of doctors not understanding or sending the patient in the wrong direction is diffuclt, time consuming, and costly.  Patients often feel as if their body is working against them and that they have very little support, validation or HOPE.  This is the plight of the dysautonomia patient.  

Local resident, Kelly Freeman, knows this journey very well.  Six years ago her busy and fruitful life as a wife, mother of four, church volunteer and CEO was brought to a screeching halt after the onset of strange symptoms following a routine dental procedure.  With no warning her life took a drastic change that led her to take online medical courses and travel around the country in search of  answers.  This was a painstaking endeavor as she was in very poor health - but the process was not in vain.  The results of her search, along with that of other patients she had come to know, birthed a grass roots initiative to fight dysautonomia through education - The Dysautonomia Project (TDP).

With a mission to bridge the gap in medical training that glosses over the workings of the autonomic system and to validate the plight of patients, Kelly collaborated with knowledgable physicians and other patients to create a book that provides a broad understanding of dysautonomia.  The book - The Dsyautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients - is written by physicians and patients FOR physicians and patients to help facilitate more meaningful discussions and speed the time for proper diagnosis and treatment.  Kelly is still recovering from the exhaustive process of giving her idea life but today, this patient-validating, informative and life-changing book stands as a one of a kind resource that has now reached around the globe.  Nearly 3,000 books have been sold world-wide, and hundreds have been distributed to physicians and offices, free of charge.

As the centerpiece of TDP’s education initiatives, the book is helping to reduce the diagnosis time for patients. With very simple in-office testing, a strong indication of dysautonomia can be made in just fifteen minutes.  The gap between 15 minutes and the six year average for diagnosis means hope, time, money and quality of life can be saved.  

Hope is a rare commodity for those suffering from this condition. The Tampa Bay area lost a beautiful light two years ago.  Christina Tournant,  Osceola High valedictorian and star swimmer, was off to MIT to live out her dream.  While she was over achieving in every area of her life, she was also battling POTS (Postural Orthostatic Tachycardia Syndrome),  a form of dysautonomia.  She fought mostly silently, as doctors told her it was all in her head.  She forged on, getting sicker and getting weaker.  More than anything she was moving forward with less hope.  This amazing young woman, with so much ahead of her, simply could not take the excruciating pain any longer and the lack of answers and understanding from the medical community was suffocating her. Tragically, she took her life after texting her mother that she loved her.  

Education brings understanding and that understanding is what can give a person hope.  Christina’s story is a heartbreaking and very real depiction of the loss of hope patients encounter.  Her story is also a life-saving one, as countless people have shared how learning of her journey led to their diagnosis.  This is exactly the mission of The Dysautonmia Project. 

Your gift TODAY will help raise funds to distribute the book to physicians and medical offices - free of charge.  Can we count on you to help us raise awareness and bridge the gap on behalf of those searching for answers to autonomic disorders?