Top 10 Holiday Gifts for People with Dysautonomia

Looking for holiday gift ideas? Here are a few things that will bring a smile to your favorite dysautonomia warrior’s face this holiday season.

Remember, when you shop for any item on Amazon through our Amazon link, 6% of your purchase will be donated to Dysautonomia International!

FighterZoomBack1. FighterWear
Nuture your loved one’s fighting spirit as they fight dysautonomia everyday! FighterWear was designed by fellow dysautonomia warrior Morgan McCastor, who donates the profits to Dysautonomia International. The hoodies are super soft and comfy. Turquoise is the color of dysautonomia awareness.

Vitassium-100ct_HR2. Vitassium
SaltStick Vitassium is an oral salt pill with added potassium that is designed not to upset your tummy like many salt pills do. It’s a great way for dysautonomia patients to get extra salt in their diet, which is usually recommended by their doctors. SaltStick donates 10% of all sales of Vitassium to Dysautonomia International. Buy it through our Amazon link and an extra 6% will go to Dysautonomia International.

f-33. PURE
NormaLyte PURE is a flavorless electrolyte powder you dissolve in water.  People with dysautonomia are often advised by their doctors to drink 2-3 liters of hydrating fluids per day, but plain water isn’t as helpful as water that has sodium and other electrolytes in it. PURE is formulated to provide maximum hydration and was developed with the input of over 1000 dysautonomia patients. NormaLyte donates 10% of all sales of PURE to Dysautonomia International.  Buy it through our Amazon link and an extra 6% will go to Dysautonomia International.

Screen Shot 2017-12-07 at 12.35.16 PM4. POTS: Riding the Wave of Dysautonomia
This book was written by one of our founding board members, Jodi Epstein Rhum.  After raising kids with POTS and EDS, Jodi took everything she had learned, and reach out to other experts like Dr. Svetlana Blitshteyn, and put it into an easy to understand book for patients and family members. Jodi founded the POTS group on Facebook and is one of the founding board member of Dysautonomia International. She donates 10% of book sales to support our research and education programs.  Buy it through our Amazon link and an extra 6% will go to Dysautonomia International.

Screen Shot 2017-12-01 at 11.53.21 AM5. Food That Cares: A Restorative Approach to Health, Living with POTS, Dysautonomia and Chronic Illness
This beautiful cookbook filled with tasty, easy to prepare, nutritious meals will get your taste buds excited. Author Wendy Baruchowitz went back to school to become a Integrative Nutritionist after she was diagnosed with celiac disease and POTS. Wendy volunteers on Dysautonomia International’s Patient Advisory Board and donates a portion of book sales to the organization.

Screen Shot 2017-12-01 at 11.32.13 AM6. “I’m so tachy” gear
Humor is a great way to cope with the difficulties of chronic illness, and our “I’m so tachy” shirts are sure to make the POTS patient in your life laugh. People with POTS have excessive tachycardia (a very fast heart rate) when they stand up. “I’m so tachy” gear is a great conversation starter and can help raise awareness as everyone will want to know, why are you tachy? A portion of the sales benefits Dysautonomia International, and the shirts are available through our Cafepress store.

Screen Shot 2016-01-05 at 6.35.22 PM7. Compression gear
Doctors often recommend 30-40mmHg full-length medical compression stockings to help dysautonomia patients avoid blood pooling and get more blood flowing back up to the heart and brain. While full-length stockings work best, some patients prefer thigh high or sock length compression gear.  They come in nude, black, many colors, and prints too! Compression socks aren’t as effective at preventing blood pooling, but may be fun to wear on days you’re dysautonomia warrior is chillin’ out on the couch. Abdominal compression can help too.  Abdominal binders are available, but women often prefer Spanx and similar compression undergarments. Compressing the lower abdominal area is key, so don’t get something that only cinches the smallest part of the waist.

Screen Shot 2017-12-07 at 12.42.18 PM8. Home/Yard Cleaning Services
Some people who have dysautonomia can have a really hard time doing regular cleaning around their home or yard maintenance. This is extra challenging for adult patients who have homes/families to care for, especially single adults.  Offer to hire a cleaning or yard maintenance service if you can afford it (“fall clean up” or “spring cleaning” are good times to do this), or give your loved one with dysautonomia a handmade “IOU” gift card that it redeemable for one day of yard cleaning or house cleaning done by you when they need it. Raking leaves, mowing the lawn, laundry, prepping dinner – believe us, they will appreciate it!

Screen Shot 2017-12-07 at 12.47.18 PM9. Cooling devices
People with dysautonomia can feel much worse in the summer heat, because some of us don’t regulate our temperature properly, or we can’t sweat.  Heat can also dilate our blood vessels more than normal, which can drop blood pressure. Cooling vests, neck wraps, wrist wraps, and personal spritzer fans may make us more comfortable in the heat of summer.

Screen Shot 2017-12-01 at 11.06.36 AM10. Glass Water Bottle Infuser
Dysautonomia experts jokingly refer to “the water bottle sign” as a sign that someone has dysautonomia. People with dysautonomia usually are advised by doctors to drink 2-3L of hydrating fluids per day, so it’s common for us to always have a water bottle with us.  It can get boring drinking plain water, so some patients like to infuse their water with melon, berries, mint, cucumber, pomegranate, citrus, herbal teas, and other flavor infusions. Look for glass bottles if you want a bottle that can hold hot and cold beverages, and something with a slip proof grip case, like this one. There are many sizes and options available.

Happy Holidays to all!!!

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather

Letter of Medical Necessity for NormaLyte

Some dysautonomia patients use NormaLyte as a way to supplement their salt and fluid intake. NormaLyte comes in several flavors and a plain flavor developed with the input of Dysautonomia International and over 1000 dysautonomia patients, called PURE. It’s an electrolyte powder you can add to water. Some people like to add a splash of their favorite flavor juice, like OJ or cranberry juice to give it a little flavor. NormaLyte generously donates 10% of sales from PURE to Dysautonomia International to support our research, physician education, public awareness and patient empowerment programs.

Some insurance companies may reimburse you for the cost of NormaLyte with a prescription from your doctor because it is considered a Medical Food Product approved by the FDA. This Letter of Medical Necessity Template may be helpful in persuading your insurance company to pay for it. Call your insurance company to see if Medical Food Products are covered by your plan when you have a prescription and a letter of medical necessity from your doctor. Then ask your doctor to fill it out. The doctor can change the letter as needed for your specific situation.

f-3

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather

Watch the Congressional Briefing on POTS

Dysautonomia International hosted a Congressional Briefing on POTS on October 19, 2017. Speakers included three of our board members: Lauren Stiles, Dysautonomia International President, Dr. Glen Cook from Naval Medical Center Portsmouth, and Dr. Jeffrey Boris from Children Hospital of Philadelphia.

Thanks to a grassroots effort that involved many Dysautonomia International volunteers, 85 Congressional staffers participated in the briefing, as well as senior staffers from the National Institutes of Health and Department of Defense. We were told this is a wonderful turnout for a first-time briefing, especially for a medical condition that most people haven’t heard of. A list of Congressional offices that participated is included below.

If any of your House or Senate members are listed, please send them an email, call or tweet thanking their staff for participating in the October 19th POTS briefing, and let them know why this is important to your family. You can find their phone numbers here and their Twitter handles here. If you are emailing or tweeting, consider sending them a link to learn more, either our POTS page (www.dysautonomiainternational.org/POTS) or our “What is POTS?” video (https://vimeo.com/187404694).

Lauren gave the patient perspective and reviewed the unfortunate lack of NIH funding that is spent on POTS research, Dr. Cook reviewed the basics of POTS, and Dr. Boris provided a brief overview of quality of life, epidemiology and co-morbidity data on POTS. Our goal was not to teach them everything about POTS, but rather to tell them it exists, it’s serious, there is a huge patient community dealing with this, and it requires more federal resources.

The feedback from the audience after the briefing was great. Three Congressional staffers let us know that they had POTS (three cheers for POTSies getting awesome jobs on Capitol Hill!), and two other staffers let us know they had children with POTS. Another staffer told us he was headed to medical school and would be sure to be on the lookout for POTS patients.  Even those who had no personal connection to POTS were very supportive of our efforts and they offered to meet with us to follow up on specific action items.

Special thanks to our bi-partisan Congressional Briefing Co-Sponsors!
Senator Roy Blunt (R-MO)
Senator Patty Murray (D-WA)
Representative Brian Fitzpatrick (R-PA)
Representative Seth Moulton (D-MA)

If you would like to find out about future advocacy Action Alerts and receive our free monthly e-newsletter, sign up for our email list today.

Congressional Offices In Attendance By State
Alabama
Office of Representative Bradley Byrne

Arizona
Office of Representative Martha McSally
Office of Representative David Schneikert

California
Office of Senator Dianne Feinstein
Office of Representative Juan Vargas
Office of Representative David Valadao
Office of Representative Raul Ruiz
Office of Representative Susan Davis
Office of Representative Pete Aguilar
Office of Representative Ted Lieu

Colorado
Office of Senator Cory Gardner
Office of Senator Michael Bennet

Connecticut
Office of Senator  Blumenthal

Delaware
Office of Senator Christopher Coons
Office of Representative Lisa Blunt-Rochester

Florida
Office of Senator Bill Nelson
Office of Representative Kathy Castor
Office of Representative Matt Gaetz
Office of Representative Ron Dejantis

Georgia
Office of Senator David Purdue

Illinois
Office of Senator Dick Durbin

Indiana
Office of Senator Joe Donnelly

Kansas
Office of Senator Jerry Moran
Office of Representative Ron Estes
Office of Representative Lynn Jenkins

Maryland
Office of Senator Elizabeth Warren
Office of Senator Chris VanHolland
Office of Representative John Delaney
Office of Representative Andy Harris

Massachusetts
Office of Senator Ed Markey
Office of Representative Seth Moulton

Missouri
Office of Senator Roy Blunt

Nebraska
Office of Senator Deb Fischer
Office of Representative Don Bacon

New Hampshire
Office of Senator Jeanne Shaheen

New Jersey
Office of Senator Bob Menendez

New York
Office of Senator Chuck Schumer
Office of Representative Paul Tonko
Office of Representative Grace Meng
Office of Representative Lee Zeldin

Pennsylvania
Office of Senator Bob Casey, Jr.
Office of Representative Brian Fitzpatrick

Puerto Rico
Office of Representative Jennifer Gonzales-Colon

South Dakota
Office of Senator John Thune

Texas

Office of Representative Kevin Brady
Office of Representative Ted Poe

Virginia
Office of Senator Tim Kaine

Washington
Office of Senator Patty Murray
Office of Senator Maria Cantwell

Wyoming
Office of Senator John Barruseo

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather

On Being A Mystery Patient – A Nurse’s Experience with POTS

I can recall vividly every odd sensation, “episode,” and doctor visit from my journey to being diagnosed with POTS (postural orthostatic tachycardia syndrome). Prior to being accurately diagnosed, I completed over a dozen diagnostic tests – including event monitors, Holter monitors, echocardiograms, blood draws, EKG’s, thermoregulatory sweat testing, tilt-table testing, and autonomic nerve reflex screening. I visited with four cardiologists, three electrophysiologists, three primary physicians, a neurologist, and several emergency room physicians. Throughout my testing, I was offered diagnoses ranging from heart blocks, to panic disorder, to lung disease, and then some. I was given prescriptions for more drugs than I can count (of which I took zero), and offered interventions such as ablation, pacemakers, consumption of two gallons of water per day, etc. During this ordeal, I became categorized as a “doctor shopper” because I continuously turned down medical advice with the true belief that I was being misdiagnosed.

My journey to being diagnosed with POTS has been one of the most frustrating, exhausting, saddening experiences of my life. Naturally, it is hard to have faith in a system which offers you so many differing opinions and passes out prescriptions for some serious medications as if they were candy. Many days I would simply cry, wondering if anyone would ever be able to help me and hoping that I would someday feel like myself again.

After undergoing extensive testing at a medical facility with people who specialize in POTS, my diagnosis was confirmed. Although there is no definitive cure for POTS, simply having a firm diagnosis with accompanying ways to improve my quality of life brought me so much joy. And so, it has become my mission to spread hope for those struggling with POTS – because together, and with the help of our medical teams – we can find ways to enjoy the small victories of each day.

First and foremost, I want to tell my POTS brothers and sisters that we need to give ourselves a break. We may not be able to do all of the things we used to do before – but we can still do something. Six years ago, I completed my second marathon, was taking 30-day yoga challenges in 104-degree heat, and making my way into the world of CrossFit. Today, I throw a “me-party” when I can walk up two flights of stairs without feeling like my heart is going to jump out of my chest. I cannot do the things I was physically capable of before without my heart rate hovering around 200, but I can go for walks. I can use the recumbent bicycle, I can do some weight-lifting exercises, and I can experiment with the rowing machine. More extreme forms of exercise may be a thing of the past, at least for now, but I feel empowered to explore new ways of working out, and feel a greater sense of pride and content with my body when it is able to perform these things for me.

I am also grateful for all of the natural therapies that having POTS has led me to discover. Naturally, it is normal to feel a sense of anxiety when you stand up to complete every day tasks (brushing your teeth, for example) and your heart rate is 140. This sense of anxiety has brought me to discover things like essential oils, guided imagery, meditation, and the simple pleasure of sitting in a bath-tub loaded with magnesium salts. Discovering ways to relax when I am having bad days with POTS has led me to implement the same stress-relieving techniques in other areas of my life, which has proven to be very beneficial.

Additionally, life with POTS has truly opened my heart and made me a profoundly more empathetic person. While I cannot say I understand what it is like to live with other chronic ailments, I can say that I understand what it is like to accommodate an unplanned condition in day-to-day life. My desire to comfort and provide support for others is bursting at the seams. As a nurse, I find myself truly and deeply invested in the balance of physical, mental, and emotional health of my patients on a level I likely could not have reached without my journey with POTS. To share in the uncertainty, fear, and anxiety of others is a profound honor and one that has inspired me to count all the blessings I still have every day.

Perhaps most significantly, my journey with POTS has made me appreciate all of my friends and family in a whole new light. Though I am sure that all of the people I love have faced their own frustrations throughout my journey, they have always been insanely supportive. My husband has been at every doctor visit that I asked him to attend, filled my water bottle for me on countless occasions, comforted me in my most anxious moments, and helped me complete tasks on days when I am really struggling. Sometimes it is easy to make it all about myself and forget about all of the support that my loved ones have given me – but when I really stop and reflect, I realize how lucky I am to have people to share in my weaknesses and triumphs with me. As the Swedish proverb says – “shared joy is a double joy; shared sorrow is half a sorrow”.

There are many flavors of POTS and just as many different treatment approaches. What we do have in common though, is the ability to wake up every morning and choose how we are going to face the day. There will be days that are hard – let us accept them and listen to our bodies. There are days that will be good – let us embrace them and give thanks for all our bodies accomplish for us. But, let us always realize that we are strong, we are capable, and we will never quit. For every one thing that we are struggling to do, let us think of three things that can do – and be grateful for these things. Let us feel gratitude for all of the unique experiences that POTS has brought into our lives that we may not have experienced otherwise.

We may not always be able to control our bodies physically, but we can always control our reactions to our setbacks and how we let them affect our lives. In exercising our unending emotional and mental strength, together, we will ALWAYS be greater than POTS. ­

maggieGuest author Maggie Sosinski has been battling POTS since 2014. She is passionate about spreading positivity and supporting those whose lives are affected by POTS and other forms of dysautonomia. She recently re-located to Minnesota where she lives with her husband and works as a nurse.

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather

#TuesdayTips: Lifestyle Adaptations

TuesdayTipsDysautonomia International asked patients to share what lifestyle adaptations they use to help manage their dysautonomia symptoms as part of our #TuesdayTips project. Look out for other #TuesdayTips posts on social media and your tips may be featured on our blog!

Breaking my meals up into smaller meals. If I’m going somewhere that requires a lot of walking or somewhere in a warm climate, I use a wheelchair or scooter The biggest adaptation is always planning when we go places. -Lydia M.

As a nurse, I take electrolyte tablets, wear complete compression hose, and drink NUUN tablets in my water! I salt absolutely everything and take frequent sitting breaks (even if I’m putting in an IV!). I always wear layers so when I have hot spells I can take them off. -Karena M.

Mornings are tough for me, so for mornings where I have to go to work I “automate my mornings” as much as possible, which means I make as many decisions the night before and get things ready so I don’t have to worry about them when I wake up. For example, I set my alarm an hour before I have to get up to take my medications (then go back to sleep) so my blood pressure and heart rate have time to stabilize I also have my medications in a pill container for the day ready to go, and I set out my clothes, pack lunch, and set out anything I need to take with me for the day. -Megan H.

Salt, salt, salt! -Brooklynn B.

Having a pillow and my walker to put my legs up on helps. Plus, the walker allows me to sit anywhere. I couldn’t survive without it. Mine is a walker/wheelchair, and the seat faces forwards and has a footrest so I can be pushed in it and also use it as a walker. -Sarah S.

Before getting out of bed, I drink water and “pump” my legs. Using compression, taking electrolyte tablets, and drinking water – no caffeinated drinks – helps. I also have regular sleep and wake patterns, and my diet is about 80% Paleo. I also read encouraging scripture each day! -Brandie D.

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather

Common Abbreviations Used in the Dysautonomia Community


Being newly diagnosed with a type of dysautonomia can be overwhelming. Besides having to learn about your diagnosis and the best ways to treat it, you may see a lot of confusing medical lingo being used by medical professionals and fellow patients in support groups.

This list is intended to help you take better control of your health care by providing you with the meanings of some of the most commonly used abbreviations and acronyms in your medical records, on doctor’s notes, prescriptions, test results, in medical books or articles, in forums, or in support groups.

RESEARCH UPDATE

A

AAG – Autoimmune autonomic ganglionopathy

AAI – Atlantoaxial instability

AAN – Autoimmune autonomic neuropathy

Abs/aabs – Antibodies or autoantibodies      

ACE – Angiotension converting enzyme

ACh – Acetylcholine

AChE – Acetylcholinesterase

AChR  – Acetylcholine receptor

ACTH – Adrenocorticotropic hormone

ADH – Antidiuretic hormone

ADHD – Attention deficit hyperactivity disorder

ADL – Activity of daily living

AE – Autoimmune encephalitis

AF – Atrial fibrillation

AI – Autoimmune

ANA – Antinuclear antibody

ANS – Autonomic nervous system

APS – Antiphospholipid syndrome

B

BB – Beta blocker

BID/bid – Taking a medication twice a day

BM – Bowel movement

BP – Blood pressure

BPM – Beats per minute

Bx – Biopsy

C

C3 – Complement component 3

C4 – Complement component 4

CCI – Craniocervical Instability

CFS – Chronic fatigue syndrome

CIDP – Chronic inflammatory demyelinating polyneuropathy

CMT – Charcot Marie Tooth disease

CNS – Central nervous system

COPD – Chronic obstructive pulmonary disease

CPAP – Continuous positive airway pressure

CRP – C-reactive protein

CRPS – Complex regional pain syndrome

CSF – Cerebrospinal fluid

CVID – Common variable immune deficiency

CVS – Cyclic vomiting syndrome

D

D5W – Dextrose 5% in water

DBHD – Dopamine beta hydroxylase deficiency

DBP – Diastolic blood pressure

Dx – Diagnosis

DVT – Deep venous thrombosis

dsDNA – Double stranded DNA autoantibodies

E

Echo – Echocardiogram

EDS – Ehlers-Danlos Syndrome

EEG – Electroencephalogram

EKG/ECG – Electrocardiogram

EMG – Electromyogram

EP – Electrophysiologist

F

FD – Familial dysautonomia

FMS – Fibromyalgia

G

g-AChR autoantibody – Ganglionic acetylcholine receptor autoantibody

GBS – Guillain Barre syndrome

GI – Gastrointestinal

GP – Gastroparesis, or general practitioner (depending on context)

H

HR – Heart rate

Hup A – Huperzine A

HA – Headache

HTN – Hypertension

HUT/HUTT – Head up tilt (aka TTT)

Hx – History

I

IBD – Inflammatory bowel disease

IBS – Irritable bowel syndrome

ICD – Implantable cardioverter defibrillator

IM – Intramuscular

IST – Inappropriate sinus tachycardia

IV – Intravenous

IVIG – Intravenous immunoglobulin

J

JHS – Joint hypermobility syndrome

L

LDN – Low dose naltrexone

LEMS – Lambert-Eaton myasthenic syndrome

LLMD – Lyme literate medical doctor

LR – Lactated ringers

M

MALS – Median arcuate ligament syndrome

MCTD – Mixed connective tissue disease

ME – Myalgic encephalomyelitis (aka CFS)

MG – Myasthenia gravis

MS – Multiple sclerosis

MSA – Multiple system atrophy

MTHFR – Methylene tetrahydrofolate reductase

MVP – Mitral valve prolapse

N

NCS – Neurocardiogenic syncope or nerve conduction study (depending on context)

NE – Norepinephrine/noradrenaline

NET – Norepinephrine transporter

NG – Naso-gastric tube

NJ – Naso-jejunal tube

NMH – Neurally mediated hypotension

nOH – Neurogenic orthostatic hypotension

NS – Neurosurgeon or normal saline (depending on context)

NSAID – Non-steroidal anti-inflammatory drugs

O

OH – Orthostatic hypotension

OI – Orthostatic intolerance

P

PAF – Pure autonomic failure

PANS – Pediatric acute-onset neuropsychiatric syndrome

PANDAS – Pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections

PCP – Primary care physician

PFT – Pulmonary function tests

Po – By mouth

POTS – Postural orthostatic tachycardia syndrome

PP – Pulse pressure

PPI – Proton pump inhibitor

PRN/prn – Taking medication as needed

PT – Physical therapy

Pt – Patient

PTSD – Post traumatic stress disorder

Q

QD/qd – Once a day

QID/qid – Four times a day

QOL – Quality of life

QSART – Quantitative sudomotor axon reflex test

QST – Quantitative sensory testing

R

RA – Rheumatoid arthritis

RAS – Renin aldosterone system

RDS – Reflex sympathetic dystrophy (aka CRPS)

Rx – Prescription

S

SBP – Systolic blood pressure

SCIG – Subcutaneous immunoglobulin

SERT – Serotonin Transporter

SFN – Small fiber neuropathy

SIBO – Small intestinal bacterial overgrowth

Sl – Sublingual

SLE – Systemic lupus erythematosus

SOB – Short of breath

SubQ – Subcutaneous

SCIG – Subcutaneous immunoglobulin

SS – Sjogren’s syndrome

SS-A – Anti-Ro autoantibodies (Sjogren’s autoantibodies)

SS-B – Anti-La autoantibodies (Sjogren’s autoantibodies)

SSc – Systemic sclerosis

SSRI – selective serotonin reuptake inhibitor

SNRI – selective norepinephrine reuptake inhibitor

SVT – Supraventricular tachycardia

Sx – Symptoms

T

TID/tid – three times a day

TMJ – Tempomandibular joint

TPN – Total parenteral nutrition

TST – Thermoregulatory sweat test

TTT – Tilt table test

Tx – Treatment

U

UCTD – Undifferentiated connective tissue disease

UTI – Urinary tract infection

V

VNS – Vagus nerve stimulation

VVS – Vasovagal syncope

W

WPW – Wolf-Parkinson-White

Special thanks to Emily, Shane, Jonathan, Natasha, Irina, Lauren and everyone else who contributed to this list!

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather

POTS Won’t Keep Player Off the Pitch

RESEARCH UPDATE (5)

At 14 years old, Frankie Moore was in the best shape of her life and had begun playing soccer on a highly competitive Elite Club National League team. Soon after earning a spot on the team, Frankie experienced a sudden onslaught of strange, debilitating symptoms. She suffered extreme exercise intolerance when playing soccer for her new team. She complained of stomach and joint pain and was having trouble swallowing. She was suddenly so weak and dizzy that she couldn’t even climb a flight of stairs.

After four months of doctor visits and evaluations, Frankie was diagnosed with postural orthostatic tachycardia syndrome (POTS).  By the time of her diagnosis, Frankie’s inability to keep up with her training schedule and perform on the soccer field as she had done previously resulted in her removal from the elite team, knocking her down a level in the sport. This was devastating to Frankie and as her symptoms persisted, her routine and the life she had before changed dramatically. She lost weight, missed school and many mornings was unable to get out of bed. It seemed highly unlikely that she would ever step foot on a soccer field again.

Still, Frankie was determined and set her mind to doing everything she could to get back to the level of play she had worked so hard to achieve.  Of course, she had many days full of discouragement, questioning “Why did this happen to me?” In fact, on many of those rough days she would try to convince herself that she didn’t really care all that much about soccer. Getting back to the level at which she had played seemed impossible.

What Frankie eventually realized was that she was fortunate in many ways. Her case of POTS was not nearly as severe as it could be. She understood that some POTS patients simply would never be able to get their bodies to cooperate with what their minds and their will wanted them to do. She knew that many kids suffered so greatly that they couldn’t even lift their heads.

With that in mind, she resolved that she could not take anything for granted. She knew she had to give it a shot to prove to herself and to encourage other patients that, depending on the severity of their individual conditions, there just might be light at the end of the tunnel.

For Frankie, luckily, there was hope that she could return to an active life. She had to push herself harder than she ever had and became committed to embracing a rigid schedule of medication and nutrition. Most difficult of all, due to the fact that her stamina and strength had been virtually depleted, Frankie devoted herself to working out more than ever.

FullSizeRender Today, at 17 years old, while Frankie still experiences symptoms of POTS, they are milder than before. She takes none of this for granted, knowing that many POTS patients aren’t as lucky. She has made her way back to performing at the level she did before her diagnosis and has regained her spot on that elite travel soccer team, Bethesda Impact ECNL.  In addition, Frankie is a key player on her high school Varsity team, the aforementioned Freedom Eagles, who fought their hearts out against a formidable foe on Monday night.

The two teams battled for 80 minutes on the pitch with the scoreboard showing 0-0 for the majority of the game.  With only 10 minutes left, the one and only goal of the game was scored. As the fans held their collective breath, time ran out and the final score showed 1-0.

That one goal? It came at the hands, or the foot, if you will, of a girl who only three short years ago wondered if she’d ever play soccer again. Frankie Moore sent the ball into the net and along with her team, she celebrated upsetting the two- time state champion to the surprise of everyone in attendance.

Well, except maybe for Frankie, who knows that in her case, a commitment to not taking anything for granted, a dedication to her medical treatment, and a focus on hard work can result in victories that are greater than the brightest lights that any scoreboard could ever display.

Guest blogger Jennifer Skinner is a mom of three baseball-playing boys, a writer, and friend of the Moore family. Her writing on parenting, sports, faith and finding extraordinary blessings in an ordinary day can be found on her blog, The View from Behind Home Plate.

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather

Fighting the Good Fight Against Ehlers-Danlos Syndrome & Dysautonomia

May is Ehlers-Danlos Awareness Month, so we interviewed Lara Bloom, Executive Director of The Ehlers-Danlos Society and Lauren Stiles, President of Dysautonomia International to ask them about Ehlers-Danlos and dysautonomia advocacy, research and collaborations between their organizations.

Q: When were you diagnosed with dysautonomia and Ehlers-Danlos (EDS)?
Lara: I was diagnosed at 24 with EDS and in 2007 with POTS.
Lauren: I was diagnosed with POTS in 2010 and while a few doctors suspected I had EDS hypermobility type, I didn’t meet the formal diagnostic criteria.  I fall somewhere on the spectrum in the new Hypermobility Spectrum Disorder category.

Q: What motivated you to begin advocating for your cause?
Lara: I went years without a diagnosis, being told I was a hypochondriac, that it was all in my head. When my diagnosis came it was a relief. I met another person with EDS for the first time in 2007 when my POTS was severe and I needed support, I went to the EDNF conference and thought how wonderful it would be to set up a UK charity that did the same.
Lauren: Like Lara and so many others in our patient community, I went through a period of prolonged misdiagnosis before we found out that I had POTS and an autoimmune disease (Sjogren’s syndrome) causing my debilitating symptoms.  Before I was properly diagnosed, I was told I was just doing this for attention from my husband because I didn’t have babies yet, among other ridiculous things.  I wanted to make sure no one else had to endure that torturous process, and I wanted to get the research done needed to provide better treatments for people with autonomic disorders.

Q: When did you start your advocacy work?
Lara: I started at EDS UK in January 2010.
Lauren: I started blogging as POTSgrrl in 2010 and founded Dysautonomia International in 2012.

Q: Is it difficult to balance your health and work?
Lara: Yes sometimes, but on the whole the more active and busy I am, the better I feel! Stillness for me, is pain. I like to keep as busy as my body allows, that differs most days but I like to try and win the battle as often as I can.
Lauren: Balancing health and work is challenging for people who are completely healthy, so, naturally, it’s going to be harder when you have a chronic illness. I know I would be able to get a lot more done if I wasn’t dealing with health issues. But sometimes when I’m feeling my most dreadful, it’s my passion for this advocacy work that keeps me going.

Q: What is the hardest part of advocating constantly?
Lara: Realising how far we still need to go. We are really at such an embryonic stage and we need to re-educate so many people. Sometimes the mountain to climb is exhausting. I try and not look up and just keep going, knowing that I am getting closer to the top with every small step.
Lauren: Choosing which advocacy front to focus on. We need advocacy in so many different areas… fundraising, research, physician education, patient and caregiver education, public awareness, educating federal and state elected officials and agencies, educating lawyers, judges and disability decision makers, advocating for students and workers to get the accommodations they need to thrive, improving insurance coverage for services our patient community needs, developing new dysautonomic clinics and training the doctors and staff needed to run those clinics and so much more. Our to do list is 10 miles long and there are only 24 hours in a day.

Q: Why do you think it’s important that organizations like Dysautonomia International and the Ehlers-Danlos Society work together?
Lara: Collaboration is everything. The EDS world is fragmented and I think this is holding us back. This is the main reason I wanted to start an international organisation. We are all fighting together in such similar missions, there is great quote by Mattie Stepanek  – “Unity is strength…. When there is teamwork and collaboration, wonderful things can be achieved”. I really believe this. The logo for our charity is the Zebra, a group of zebras together is called a dazzle. When everyone comes together, we can dazzle.
Lauren: It’s critical that we work together because our patient communities overlap so much. We can’t figure out autonomic disorders like POTS and OI until we figure out EDS, and we can’t figure out EDS until we figure out POTS and OI. About 33% of POTS patients have EDS, and about 80% of EDS hypermobility patients have either POTS or OI.  Each diagnosis is a clue to solving the other diagnosis. Lara and I are working to bring the EDS and dysautonomia researchers to the same table, literally, because we need them to learn from each other and work together on research projects seeking to understand the relationship(s) between EDS and dysautonomia.

Q: What plans do you have to work together?
Lara: I think it would be great to work on research and try to hold conferences together in the future.
Lauren: We have discussed holding a joint conference, which would be great. In the meanwhile, we are attending each other’s conferences. Lara and Dr. Clair Francomano will be presenting on EDS at Dysautonomia International’s conference this summer and meeting with dysautonomia researchers to discuss the importance of screening for EDS.  Lara invited me to participate in the Autonomic Working Group of the International Consortium that recently produced a journal article summarizing what we know to date about the relationship(s) between EDS and dysautonomia. This is an area that desperately needs more research.

Q: What is the value of working with other organizations?
Lara: Other minds, opinions and ambition coming together to make a difference. There is nothing more powerful than a patient advocate behind an organisation, it gets stuff done!!
Lauren: Since we both represent diverse communities of people from all over the world, it’s really helpful to see the different perspectives and experiences. Plus, we have different people in our networks of patients, caregivers, doctors, industry contacts, government contacts, etc. The more information sharing between our networks, the better for all of the patients we serve.

Q: What do you think the value of the patient community is?
Lara: They are our voices, our strength and hope. Everything we do is for our patient community and if we educate them correctly they are an excellent army fighting for our cause.
Lauren: I don’t think either us would be doing this if there weren’t strong EDS and dysautonomia patient communities.  I always tell people, if this awful misdiagnosis had just happened to me, I could have gotten over it and moved on with my life. But when I went online and saw literally tens of thousands of other people who had been treated the same way, I knew I had to do something about it.  Every patient that volunteers for our organization says the same thing, “I want to give back because I want to make sure no one else has to endure what I went through.” The first time I heard Lara lecture, that’s exactly what she said too. Dysautonomia and EDS patients have unspoken bonds with people who live across oceans, because we have a shared experience and shared goals of improving the way the medical community interacts with us.

Q: How do you hope to change the way dysautonomia and EDS are viewed/treated?
Lara: I would like both to receive the respect and recognition that deserve and need. I also want people to truly understand the multi-systemic nature of both of these conditions and for the research to be done to prove what we already know anecdotally.
Lauren: I want patients to be believed and treated with compassion. I want our concerns to be addressed with the best medical care currently available, in a timely manner, without having to fight tooth and nail every step of the way. I want more government, industry and charitable investment in research, so we can develop better treatments, and heaven forbid, a cure, for any of these conditions. Specifically on the research front, I would like to see more pathology studies trying to determine why EDS patients develop small fiber neuropathy. I think this will be critical in understanding the relationship(s) between EDS and dysautonomia.

Q: What is the most rewarding part of what you do?
Lara: As cliched as it sounds, it is making a difference. Whether that is with a medical professional at a conference through changing their perception of EDS, or inspiring a patient that EDS does not mean they can’t have a good quality of life. The most rewarding moment of my career so far was looking around the room at the international symposium in NYC and knowing that we had such amazing people dedicated to making a difference. The new nosology is something that is 20 years overdue and being part of making that happen was incredibly rewarding and gave me hope and renewed strength for our new global mission.
Lauren:  I love empowering young people to become their own best advocates.  Sometimes they just need little encouragement and direction, and then they blossom into a self-confident activist who can speak eloquently for themselves and their fellow patients. I also like getting invited to lecture at medical institutions like Harvard Medical School and the National Institutes of Health, because I know there are doctors in the room who will treat the next dysautonomia patient better because of what they learned. Mischievously, I also enjoy sending some of the more obnoxious doctors who misdiagnosed me invites to my lectures and copies of the journal articles I have published.

You can learn more about EDS and dysautonomia onThe Ehlers-Danlos Society and Dysautonomia International websites.
Lara&Lauren

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather

Early Sjögren’s Antibodies in Dysautonomia Patients

April is Sjögren’s syndrome awareness month.  Since Sjögren’s (pronounced SHOWgrins) is the second most common cause of autonomic neuropathy, Dysautonomia International will be posting Sjögren’s/dysautonomia related info this month on social media, starting with this blog post.

Dysautonomia International President Lauren Stiles was diagnosed with POTS and Sjögren’s syndrome in her early 30s, younger than the typical Sjögren’s patient. She co-authored a research study on Sjögren’s syndrome related antibodies in dysautonomia patients that was presented at the 2016 American Academy of Neurology annual meeting. The study found that 41% of idiopathic dysautonomia patients who reported either dry eyes or dry mouth had antibodies that are found in the early stages of Sjögren’s syndrome.

Dysautonomia Dispatch Blog Editor Emily Deaton interviewed Lauren to answer some of the questions we received after we shared the initial abstract.

Screen Shot 2016-04-18 at 2.36.20 PMAutoimmunity & Autonomic Impairment: Preliminary Characterization of a Clinical Syndrome with Sjögren’s Features Associated with Novel Organ Specific Antibodies.

Q: Can you explain this study in plain English?
A: Sure. Dysautonomia International collaborated with the neurologists at South Shore Neurologic Associates in New York and Sjögren’s researchers at SUNY Buffalo.  We looked at the records of all of South Shore Neurologic Associates’ patients over the past year who reported either dry eye or dry mouth symptoms, plus some kind of other autonomic problem, who didn’t have an identifiable cause (meaning their dysautonomia was “idiopathic”), and who didn’t have the SS-A and SS-B antibodies doctors common rely upon to diagnose Sjögren’s.  Out of 95 idiopathic dysautonomia patients included the study, we found that 41% of them had one or more  novel early Sjögren’s antibodies (salivary protein-1 [SP-1], parotid secretory protein [PSP], and/or carbonic anhydrase-6 [CA-6]). Then we looked at the symptoms found in the antibody positive patents compared to the symptoms in the antibody negative patients.  They essentially had the same symptom profiles, but the antibody positive patients were more likely to have constipation.

Q: What type of dysautonomia did the patients in this study have?
A: Rather than focusing on the formal diagnostic criteria used to classify the different types of dysautonomia, we focused on the symptom presentation.  We looked at symptoms suggesting autonomic dysfunction: orthostatic intolerance, bladder dysfunction, secretory dysfunction (dry eyes/dry mouth), and gastrointestinal dysfunction. The study included individuals who had previously been diagnosed with postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, neurocardiogenic syncope, orthostatic hypotension, orthostatic intolerance, and gastroparesis, which are all forms of dysautonomia. Sjögren’s is the second most common cause of autonomic neuropathy, after diabetes, so it’s not surprising that we would see a wide variety of dysautonomia patients who have markers associated with Sjögren’s syndrome.

Some of the study subjects had also been diagnosed with Ehlers-Danlos syndrome, mast cell activation syndrome, chronic fatigue syndrome, fibromyalgia, Lyme disease, and other overlapping conditions seen in our patient community.

Q: Do these antibodies cause dysautonomia?
A: The antibodies involved in this study (SP-1, PSP and/or CA-6) are targeting the salivary glands, so they may be causing or contributing to dry mouth, but we don’t think they are causing all of the other aspects of dysautonomia in these patients.  These antibodies have been identified early in the course of Sjögren’s syndrome in two mouse models of Sjögren’s and in humans.  Sjögren’s comes with a lot of different antibodies, so there are likely other antibodies or immune markers in these patients that are disrupting the autonomic nerves, resulting in dysautonomia symptoms.

One likely culprit is muscarinic-3 receptor antibodies, which have been found in up to 90% of Sjögren’s patients in other studies, particularly Sjögren’s patients who are younger or earlier in the course of the disease.  Muscarinic-3 (M3) receptors are part of the autonomic nervous system.  When an M3 antibody binds to these receptors, this can impair the messages sent between the autonomic nerves, resulting in symptoms of dysautonomia. Unfortunately, reliable M3 antibody testing is not commercially available at this time. However, we are working on a study with Dr. Steven Vernino at UT Southwestern to look for these antibodies in POTS patients.

Q: How can patients get tested for these antibodies?

A: If you have any symptoms of dry eyes or dry mouth, you can ask your doctor to test you for the early Sjögren’s antibodies. Your doctors may not have heard about these antibodies, but you can show them this website about the panel. The panel includes the early Sjögren’s antibodies (SP-1, CA-6 and PSP), with an option to include commonly tested Sjögren’s antibodies (SS-A, SS-B, ANA, RF). Your insurance company may cover the test. Most doctors will not diagnose Sjögren’s based on the early Sjögren’s antibodies alone, but they may be helpful in making a diagnosis in patients who present with symptoms of Sjögren’s (dryness, neuropathy, dysautonomia, fatigue, joint pain, etc.) in light of other Sjögren’s tests results too.

Q: Is Sjögren’s common in dysautonomia patients?

A: Sjögren’s is the second most common cause of autonomic neuropathy, after diabetes, and has been associated with postural orthostatic tachycardia syndrome, orthostatic hypotension, orthostatic intolerance, autoimmune autonomic ganglionopathy, gastroparesis, and other forms of dysautonomia. In fact, the dry eye that Sjögren’s is well known for is a symptom of dysautonomia, since the tear glands are controlled by the autonomic nervous system. 1 in 10 people who have dry eye have Sjögren’s syndrome. Sjögren’s impacts 4 million Americans, but 3 million of them are undiagnosed.

Q: Isn’t Sjögren’s an older woman’s disease?
A: The stereotypical Sjögren’s patients is a Caucasian woman over age 40. However, Sjögren’s can occur in any race or ethnicity, and 10% of patients are male. While Sjögren’s is not as common in children as it is in adults, it can occur at any age. The youngest novel Sjögren’s antibody positive patient in our study was 13. Younger Sjögren’s patients tend to present with different symptoms than older patients, with more neurological symptoms and less dryness.  The dryness usually develops slowly over time as the disease progresses.

The current diagnostic criteria for Sjögren’s were developed based on studies of older patients who have advanced/severe dryness associated with their Sjögren’s. Many experts now agree that the current diagnostic criteria are not catching patients who are at an earlier stage of the disease, who tend to be younger and have less severe dryness, when you may actually be able to prevent some of the long term damage from occurring. People diagnosed with Sjögren’s in their 50s have probably been dealing with it for 20-30 years before they were “sick enough” to get diagnosed.

Q: Can you grow out of Sjögren’s?
A: Unfortunately, no.  There are a small percentage of patients who may go into remission, but for most patients Sjögren’s is a slowly progressive, systemic autoimmune disease.  Diagnosing and treating it as early as possible can help slow down the progression and can help avoid serious organ and neurological complications.

Q: Can Sjögren’s cause problems other than dysautonomia? 
A: Definitely.  Sjögren’s is one of those diseases where everyone can present with different symptoms.  Fatigue, muscle pain, and joint pain are very common amongst Sjögren’s patients. Some patients have a limited disease that primarily impacts their exocrine glands (tear, salivary, and other moisture producing glands throughout the body).  But most patients develop one or more extra-glandular complications, such as vasculitis, interstitial lung disease, renal tubular acidosis, atrophic gastritis, liver disease, gall bladder disease, pancreatitis, or neuropathy. Sjögren’s can attack any part of the nervous system, from the brain to the small fiber nerves in your skin.  About 50% of Sjögren’s patients have a second autoimmune disease, most commonly rheumatoid arthritis, lupus or Hashimoto’s thyroiditis.

Q: Some doctors say it’s not worth it to test for Sjögren’s, because there are no treatments. Is that true?
A:  Arrgh, no!  A lot of doctors don’t really know anything about Sjögren’s (just like dysautonomia), so they may assume it’s just a “dry eyes and dry mouth” problem that can be easily treated with eye drops and mouthwash.  This is completely false.  Sjögren’s is a progressive, systemic autoimmune disease.  It’s essential to get diagnosed and treated as soon as possible to prevent long-term complications.  Sjögren’s comes with a 44-fold increased risk of lymphoma, doubled risk of heart attacks, increased risk of stroke, increased risk of fetal heart block, dental decay, corneal damage, organ damage, and a really terrible quality-of-life if left untreated.  You deserve to know if you have it or not, so that you can obtain proper medical care.  Your family also deserves to know, because autoimmune diseases often run in families.  If you have dry eyes or dry mouth that is not due to medication (many medications cause dry mouth), plus dysautonomia symptoms, and your doctor won’t help you get tested you for Sjögren’s, find a better doctor. 
Many of the autonomic neurologists listed on Dysautonomia International’s physician listing know how to screen a patient for Sjögren’s.  Another way to find a good Sjögren’s doctor is by contacting the closest chapter of the Sjögren’s Syndrome Foundation, and asking them who the best doctors are to diagnose Sjögren’s in your area. Keep in mind that most Sjögren’s doctors are rheumatologists, and they generally don’t deal with the neurological aspects of Sjögren’s, like dysautonomia.

 

Q: What are the treatments if I have Sjögren’s?
A: While there is no cure for Sjögren’s, there are many treatments available to minimize symptoms and reduce the risk of complications. Pharmacological treatments include lubricating, autologous serum, or cyclosporine eye drops, punctal plugs, lubricating mouth washes, mouth rinses to help remineralize teeth, pilocarpine, cevimeline, hydroxychloroquine, and in more severe cases, immune modulating treatments like high dose steroids, intravenous immunoglobulin, mycophenolate, or rituximab. There are several new immune modulating treatments being explored. Treatment is very individualized and most pharmacological treatments are not FDA approved specifically for Sjögren’s. Lifestyle measures, like using humidifiers, consuming an anti-inflammatory diet, regular exercise, stress management, and proper sleep, also play an important role in the management of Sjögren’s.


Q: Why do you talk about Sjögren’s so much?
A: Good question!  I do talk about it a lot because that’s the root cause of my dysautonomia and alphabet soup of other diagnoses, and I want to make sure patients are getting properly screened for it.  Sjögren’s is a common cause of dysautonomia, but it’s treatable in a way that is completely different than how we treat most other causes of dysautonomia. And if you have Sjögren’s, but remain undiagnosed and untreated, your chances of getting better are slim. Sjögren’s rarely improves on its own.  It’s slowly progressive, so it’s critical to be diagnosed as soon as possible if you have it. 
Given the known overlap between Sjögren’s and dysautonomia, I suspect there are many undiagnosed Sjögren’s patients within the dysautonomia community.  This study confirms that suspicion – 41% of idiopathic dysautonomia patients with dryness is a lot of people!  Just like dysautonomia patients, Sjögren’s patients experience significant diagnostic delays due to a lack of public and physician awareness.  The Sjögren’s Syndrome Foundation has set a goal of reducing the average diagnostic delay in Sjögren’s from 4.7 years to 2 years in the next five years. Anything I can do to help dysautonomia patients who may have undiagnosed Sjögren’s “find their root cause,” I’m happy to help.

I am very interested in other causes of dysautonomia too, because we need to understand all of the root causes to be effective advocates for our patient community.  One of the things we’ve been able to do with Dysautonomia International is identify patients who have expertise in their own diagnoses (EDS, MCAS, Lyme, Chiari, Sjögren’s, lupus, celiac, antiphospholipid syndrome, CRPS, gastroparesis, etc.) and engage them in research and physician education – because we need the researchers and physicians to understand all of these things and figure out how they are related, or not related.  We won’t be satisfied until we’ve found everyone’s root cause, more effective treatments, and a cure for all of us.

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather

The Affordable Care Act & Insurance Issues in the Dysautonomia Community

As Washington politicians continue to play political football with healthcare, Americans find themselves struggling to know what’s going on and what will happen to our healthcare system in the near future.

While we are strictly a non-partisan organization, and it’s difficult to discuss health care policy and the Affordable Care Act (also known as “Obamacare”) without seeming to take sides, we thought this would be an important issue to discuss with our patient community.  We wanted to know how dysautonomia patients and caregivers felt about this important issue, so we conducted a survey to ask patients and caregivers about their perspectives.

In January 2017, we prepared a politically-neutral survey to gather input from dysautonomia patients and caregivers around the US on their feelings and experiences related to insurance coverage and the Affordable Care Act. The survey was brief so that we could analyze the data quickly, and it certainly doesn’t capture the full scope of this very complex issue.  We present a summary of the results below so readers can make up their own minds.

Whatever your perspective, we encourage dysautonomia patients and families to use this information and contact their federal representatives to have their voices heard. You can find contact info for your federal representatives on our Elected Officials Look Up tool. You may be one voice in a sea of many, but Congressional offices keep track of how many constituents contact them on each issue, and what positions you share.  Calling and emailing your Congressional members are the most effective way to communicate. Postal mail may take weeks to arrive because it goes through intense security scrutiny before being delivered to Congress. Requesting a meeting with the local office of your elected officials may help too. Ask to meet with the office staffer who is most directly involved with health policy matters.

Dysautonomia International has been the voice of the dysautonomia community on Capitol Hill since our first Dysautonomia Lobby Day in 2013, bringing hundreds of families to Capitol Hill to meet with their House and Senate members.  We’ve engaged Congress and federal agencies on issues ranging from increased research funding for autonomic disorders, to the approval of drugs that help dysautonomia patients, to providing insurance coverage for autonomic testing. You can read our other federal policy and advocacy positions here.


Survey Title:  The Affordable Care Act & Insurance Coverage in the Dysautonomia Community

Survey Design: Politically-neutral questions regarding insurance matters were asked using Survey Monkey, a web based survey data collection tool. The survey was distributed through Dysautonomia International’s email list, social media channels, and patient support groups. Survey participants were instructed that the survey was meant for US citizens and residents. There were no age or other limitations on survey participation. Within the first 48 hours after its release, 339 individuals participated in the survey, and their answers form the basis for this summary. Participants were not required to provide their name or other personally identifiable information, although the final question of the survey permitted them to do so if they wanted to. Basic statistical analysis was performed in Microsoft Excel.

Summary of Survey Results:
US Citizenship or Residency
Of the 339 participants, 337 responded affirmatively that they were US resident or citizen and 2 individuals did not answer the question.

Relationship to Dysautonomia
62% of respondents were dysautonomia patients, 29% were caregivers for a dysautonomia patients, 8% were both a dysautonomia patient and caregiver, and one individual reported “none of the above.”

Access to Insurance
98% of respondents had insurance at the time of the survey.

Source of Insurance
Insurance was provided by the following sources. Respondents were allowed to chose more than one option, since some people have insurance from multiple sources.
Spouse’s Employer: 31.70%
Respondent’s Employer: 20.26%
Self-Funded: 17.97%
Parent’s Employer: 12.42%
Federal Government: 11.76%
State Government: 11.73%
Union: 0.65%
Local Government: 0.33%
Other: 7.84% (“other” answers included university sponsored insurance, COBRA, living overseas with travel insurance, etc.)

Since our patient community includes adolescent and college-aged students, we asked whether respondents were on their own insurance plan or a parent’s plan. 81% of respondents were on their own plan and 19% were on a parent’s plan.

Household Income
Respondents report an average household income of $86,990. The median household income in the US was $55,775 in 2015.

This finding is consistent with prior studies identifying higher than average median household income in POTS families. This may reflect the difficulty in getting diagnosed with POTS. Individuals from lower income families may have a harder time obtaining a diagnosis, as the average POTS patients sees 7 doctors before being diagnosed with POTS, and 25% of POTS patients see more than 10 doctors before being diagnosed with POTS. Lower income individuals may not have the financial means to see 7-10 doctors or more, and may thus remain undiagnosed.

Monthly Health Insurance Premiums
Respondents contribute an average of $447 per month towards their health insurance premium.

Opinion on the Affordable Care Act
25% of respondents thought that the Affordable Care Act should be kept as is, 56% felt that it should be amended to change certain parts, and 19% felt that it should be repealed entirely.

Pre-Existing Health Condition Denials of Coverage
23% of respondents had been denied insurance coverage due to a pre-existing health condition prior to the adoption of the Affordable Care Act, which prohibits insurers from denying coverage based on pre-existing conditions.

Affordability of Health Insurance Coverage
22% of respondents were unable to afford health insurance prior to the adoption of the Affordable Care Act.

28% of respondents said the Affordable Care Act allowed them to purchase health insurance for themselves or a dependent that they would not have been able to afford otherwise.

Impact of the Affordable Care Act on Dysautonomia Patients and Their Immediate Families
45% of respondents felt that the Affordable Care Act benefitted them personally, 16% felt it didn’t impact them at all, 25% felt that it harmed them and 15% weren’t sure. The reasons given varied widely, from allowing a respondent or respondent’s family to have insurance for the first time, to concerns about higher co-pays. One of the most frequent benefits reported was the ability of young people with POTS to stay on their parent’s plan until age 26. One of the most frequent complaints reported was increased health care costs.

40% of respondents felt that the Affordable Care Act benefitted members of their immediate family, 20% felt that it didn’t impact members of their immediate family, 24% reported that it harmed members of their immediate family, and 16% weren’t sure. Reasons given varied widely, but were similar to the reasons given in the prior question.  Many individuals felt that it benefitted their family members by providing health insurance for the first time or allowing children to stay on a parent’s plan until age 26, while many others expressed concern about higher overall health care costs.

Anticipated Impact of Repeal
52% of respondents felt that repeal of the Affordable Care Act would impact them negatively, 8% felt that it wouldn’t impact them at all, 13% felt that it would impact them positively, and 27% weren’t sure.

Political Leanings
42% of respondents tend to identify politically as Democrat, 27% report no party affiliation, 20% tend to identify as Republican, 7% prefer not to say, and 6% tend to identify with a third party.

Conclusion:
The overall picture is complex, with a diversity of experiences and perspectives within our patient community. The data suggests that the Affordable Care Act has benefited more dysautonomia patients and their families than it has harmed. A majority of individuals who responded to this survey felt that a repeal of the Affordable Care Act would impact them negatively (52%), and an even larger majority felt that it should remain as is or be amended (25% and 56%, respectively). The most common concern raised by those who felt they did not benefit from or did not favor the Affordable Care Act was increased health care costs.

facebooktwittergoogle_plusredditpinterestlinkedintumblrmailby feather
facebooktwittervimeoby feather