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Charity Ride for Dysautonomia International and why it’s so important

For my Bethesda (or Maryland) friends and family, there’s a charity ride on Oct. 11th at Zengo Cycle for Dysautonomia International – a sister charity to EDNF, because conditions overlap so much.

To sign-up, go to: www.zengocycle.com. You first have to purchase the charity ride series and then book the classPastedGraphic-1

 

What is Dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in light-headedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.”

Forms of Dysautonomia:

– POTS
– Nuerocardiogenic/Vasovagal Syncope
– Multiple System Atrophy (MSA)
– Pure Autonomic Failure
– Autoimmune Autonomic Ganglionopathy
– Baroreflex
– Autonomic Dysreflexia
– Cerebral Salt Wasting Syndrome
– Diabetic Autonomic Neuropathy
– Familial Dysautonomia
– Complex Regional Pain Syndrome (CRPS)
– Panayiotopoulos Syndrome

Conditions that cause Dysautonomia:

– Diabetes and Pre-Diabetes
– Amyloidosis
– Ehlers-Danlos Syndromes
– Mast Cell Activation Disorders
– Lupus
– Lyme Disease
– Parkinson’s
– Rheumatoid Arthritis
– Celiac
– Sjoren’s Syndrome
– Thyroid Conditions
– Antiphospholipid Syndrome
– Charcot-Marie-Tooth Disease
– Chiari Malformation
– Chronic Inflammatory Demyelinating Polyneuropathy
– Chron’s Disease & Ulcerative Colitis
– Deconditioning
– Delta Storage Pool Deficiency
– Mitchochondrial Diseases
– Sarcoidosis
– Paraneoplastic Syndrome
– Toxicity
– Physical Trauma, Surgery and Pregnancy
– Vitamin Deficiencies
– Spinal Chord Injuries
– Brian injuries
– Alcoholism
– Multiple Sclerosis
– Surgeries involving the nerves

Symptoms of Dysautonomia:

– Excessive Fatigue (occurs comorbid with Chronic Fatigue Syndrome)
– Excessive Thirst
– light-headedness & Dizziness (associated with Orthostatic Intolerance and POTS)
– Rapid Heart Rate or too slow heart rate
– Blood Pressure Fluctuations
– Trouble Breathing or Swallowing
– Shortness of breath with exercise or activity
– Distension of the abdomen (I have no comment for this one, other than “Here’s your sign.”)
– Abnormal Dilation of the Pupils leading to blurry vision
– Urinary Incontinence or Nuerogenic Bladder Dysfunction
– Gastroparesis usually associated nausea, acid reflux and vomiting (see also abdominal distention)
– Constipation
– Excessive Sweating or lack of sweating
– Heat intolerance – usually brought on by activity or exercise
– Problems with temperature regulation, such as Reynaud’s & other circulatory issues
– Problems associated with Sexual Dysfunction
– Much more

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Do you need to have all of these symptoms to have Dysautonomia? NO

It is estimated that, “one-to-three million Americans suffer from the illness, and 85% are women.” Furthermore, it’s estimated that “one in 100 teenagers develops POTS.

The above statistics were taken from a story in Teen Vogue called How One Girl Is Surviving A Common Yet Mysterious Syndrome That Threatened to Ruin Her LifeYou can read an excerpt from her story below, as well as click on the link at the bottom of the page from the show The Doctors, which recently featured a different woman with POTS.

Eight years ago today, at the age of 17, I sustained a concussion while playing soccer. In the hours that followed I knew I was badly hurt, but what I didn’t realize was that the concussion had caused me to develop a life-changing syndrome.

From that moment on, I suffered overwhelming dizziness, staggering fatigue, full-body weakness, and crushing migraines. I spent the next month in bed completely dazed. I missed so many classes that my high school urged me to take a leave of absence. Doctors assured me that though my symptoms were significant, they would subside. I believed them and continued on with my junior year. I struggled to stay awake, let alone attend classes. I have vivid memories of sitting through tests, riding waves of dizziness so strong I had to clutch my chair so I wouldn’t tumble off.

I made it through that year and was accepted into Georgetown University’s School of Foreign Service. I was proud of myself and ready to move on — but my body had other ideas. My symptoms never subsided. For seven years, I searched for an explanation. I had more than 100 medical appointments and no doctor could figure me out.

Many physicians, it seemed, dismissed my complaints and minimized my condition because I was a young woman. I am a strong self-advocate, yet medical professionals brushed aside my reports of crippling symptoms, apparently unable to reconcile that I appeared healthy on the outside. I had one doctor tell me that what I was describing was not scientifically possible and therefore I must be making it up. Others gave a swift diagnosis based on assumptions — like PMS, anxiety, and IBS — that didn’t come close to explaining my myriad symptoms.

As my condition wore on, I became increasingly isolated. I spent most of my college years either bedridden or making up missed work. It was difficult to explain my absence to friends when I didn’t understand what was wrong. People drifted away and my world shrunk even further. I spent long stretches of time completely alone, too weak to leave my apartment.

Then, unbelievably, things got worse: I sustained another concussion. My symptoms multiplied — spreading to nearly every system in my body. I was confronted by painful bloating, excessive sweating, numbness, constipation, diarrhea, nausea, trouble swallowing, hypersensitivity, joint pain, twitches, sleep disturbances, body aches, and temperature intolerance. It felt like my body was falling apart.

Finally, after seven years, a gastroenterologist suggested my symptoms could be due to a problem with my autonomic nervous system. I flew to the Mayo Clinic where they finally confirmed a diagnosis. I have POTS, or Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia (an umbrella term used to describe autonomic nervous system disorders). The autonomic nervous system regulates all functions of your body that you do not consciously control. In POTS patients, the autonomic nervous system is severely out of whack, which causes the debilitating and far-ranging symptoms that plague me.

When I received the diagnosis, I was relieved to at last have a name for my condition. But that relief turned to despair when I learned that POTS is a chronic illness, and there are few effective treatments and no cure. I remember thinking that though I was alive, I had lost my life. I mourned for the person I was meant to be. The girl I saw traveling the world, having a rewarding career, and taking risks. I contrasted that with the real version of me. The one who was in and out of a wheelchair and had to rely on her parents for help. I felt like I was 24 going on 90 and my life was over. It was as if I had no options, no opportunities, and no say.

Despite how long it took for me to receive a diagnosis, my story is not unique. The average diagnostic delay experienced by POTS patients is six years. It is crucial to know that POTS is not rare. One-to-three million Americans suffer from the illness, and 85% are women. Just as POTS disproportionately affects women it also strikes the young. One in 100 teenagers develops POTS. I attended the annual Dysautonomia International Conference in Washington, D.C. this summer and it was a sea of mothers and daughters. These young women are battling a terrible illness and are facing adversity at every turn. Though many are doubted by doctors just as I was, POTS is incredibly debilitating. Twenty-five percent of patients are so disabled they cannot attend work or school.”

In the medical/clinical side of my life, patients who have POTS or clear symptoms associated with Dysautonomia, are sometimes referred to as the “dizzies.” These dizzy patients (i.e. – having the symptom of dizziness often when standing up, or after having blood taken) are often young, caucasian females, and present with complex cases that are hard to manage by a physician in a single specialty. Adult patients from any ethnic and racial background are also commonly seen. The reason these patients are hard to help, is because the patients who complain of frequent dizziness, often also have a bunch of other issues that crossover single specialty lines. Diagnosis and management is not commonly known by physicians of all specialties, and Dysautonomia is still considered rare by many.

Dizziness is one of the main symptoms Dysautonomia, specifically POTS and OI (Orthostatic Intolerance). Symptoms and issues associated with autonomic dysfunction, usually stem from one of the forms of Dysautonomia. However, all types of Dysautonomia can be caused by yet another underlying condition as mentioned above. Patients tend feel like their bodies are falling a part. Most feel quite frustrated, trying to understand why these seemingly random and unrelated issues are happening, and all want someone to please just help them figure it out.

Is there a cure? NO, but there are lifestyle changes and treatments for secondary symptoms and conditions that can provide great relief for most patients.

Last, I think it’s also important to point out that there are a number of patients who have Dysautonomia/POTS stemming from Ehlers-Danlos Syndrome (EDS) and/or a type of Mast Cell Activation Disorder (MCAD). Of these patients with EDS and/or MCAD, research has shown that numerous also have autism, sensory processing disorder (SPD), or learning disabilities. Many also have abnormalities of the spine (i.e. Scoliosis and Kyphosis), or Craniocervial Instability (CCI). Some have issues related to Intracranial Hypotension, often causing spontaneous cerebrospinal fluid leak. Intracranial Hypotension can be related to excess cerebrospinal fluid that does not drain.

THIS is one of the very many labels that I’ve personally collected over the years and is one of my invisible, yet constant daily battles. The headaches and pain due to having a bobble head (AKA – Craniocervial Instability), herniated discs along my neck and back, and the pressure changes in my head caused by having too much cerebrospinal fluid that doesn’t drain, are horrendously debilitating. They come on suddenly and only further complicate symptoms from Dysautonomia and the whole shebang

Our bodies do not operate in perfectly contained boxes, all separate from each other. The dysfunction of one system or one body part, due to a genetic mutation, trauma or illness, is not always isolated. In fact, it’s usually not.

 

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Too many times to count, I’ve responded to people asking for more information, or for a physician who can connect the dots. Many often email again, asking how to contact one of the few physicians, who specializes in the diagnosis and treatment of one of these umbrella conditions. That’s where this gets so hard. That’s where the reality of all that I’ve learned and done over the last 10 years really sinks in – there is no cure. There are far too few physicians who can connect the dots. And there are even less, who really understand how to diagnose and treat these conditions.

It’s no fault to our physicians. Most medical schools do not teach doctors to ask patients about seemingly unrelated other conditions, especially ones outside of their speciality. Ever hear of the Zebra mascot for all rare conditions? If not, read here.

Living with an invisible, yet not-so-rare condition(s) and the stress of trying to find help, causes patients to suffer for far too long. Patients yearn for someone who understands, as well as a for a proper diagnosis. Unfortunately, many get much worse as a result of being dismissed, ignored and because of the way our healthcare system was established. 

The result? A healthcare epidemic.

THIS is why awareness campaigns like Invisible Illness Week are so important. Most, if not all, of these symptoms and conditions cannot be seen. People look totally fine most of the time.

THIS is why charity fundraisers for foundations such as Dysautonomia International, EDNF, EDS International, the EDS 2016 International Symposium and many others, are so.very.very.crucial.

These conditions are totally misunderstood, misrepresented and far too often misdiagnosed.

These conditions are not that rare, they are rarely diagnosed.

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Last, there are a ton of signs and symptoms of autonomic nervous system dysfunction/Dysautonomia, that be correlated to conditions such as EDS, MCAS and so many others. Where one condition ends and other begins, who knows…..

However, the only way we will find out, is to support research efforts for Dysautonomia International and other organizations, through fundraising events such as the charity ride at Zengo Cycle.

To sign-up for Dysautonomia International’s charity ride at Zengo Cycle on October 11th, 2015 at 1pm, go to: www.zengocycle.com.

Stay updated on event details, by joining the official Facebook event page!

Coordinator of the Dysautonomia International Charity Ride at Zengo Cycle is Elyse Schwartz, MSW. Elyse is part of the patient advisory board for Dysautonomia International and she is also a licensed clinical social worker. You can read more about Elyse below (excerpt is from Dysautonomia International’s website): 

Elyse was diagnosed with POTS during college. She became a licensed clinical Social Worker, earning her Master’s Degree from Boston University and her undergraduate degree from Northeastern University. She has worked with children, adolescents and adults in a variety of settings, including assessment units, emergency rooms and out-patient mental health clinics. She is committed to increasing awareness of autonomic disorders to help future generations. Elyse co-founded InnerWorks Wellness LLC, a psychotherapy practice in Rockville, MD that specializes in working with people who have various forms of dysautonomia. Elyse enjoys working out to help manage her POTS symptoms. She has completed seven half-marathons and looks forward running with Team Dysautonomia.”

For those who know me personally, know my own history and my family’s, it’s obvious why supporting this charity ride for Dysautonomia International is so important – EDS, Amyloidosis, Sarcoidosis, Diabetes, Mast Cell Activation Disorders, etc., etc.

And, I obviously want to support Zengo Cycle and take a class too!

Other resources and information: 

What is Dysautonomia?

Familial connection between Mast Cell Disorder, EDS and Dysautonomia

Teen Vogue story about teenage girl with POTS

Woman with POTS on The Doctors

Dysautonomia International

Ehlers-Danlos National Foundation

Zengo Cycle

My own Zengo Cycle Story – Climbing out of the EDS Spiral 

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