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.

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!

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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.

 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.

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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.

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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.

Autoimmunity & 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.

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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.

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It’s such a benign question, and probably something you hear several times a week… “how are you?”  The standard and somewhat expected answer is “I’m fine.”  But when you live with a a form of dysautonomia or any chronic illness, you may dread answering this question.

If you answer truthfully, revealing the litany of symptoms you are dealing with at that moment, some people may interpret this as whining or being negative.  “I’m so lightheaded I can’t stand up without losing my vision to a field of grey, I’ve puked twice today, I’ve had a migraine for four days and the pharmacy ran out of my beta-blocker so my heart rate is hovering around 135.”  Speaking the truth about how you are really feeling rarely goes over well, unless you have very understanding friends and family.

If you give the standard “I’m fine” response, this creates expectations that you may not be able to live up to.  Maybe you can’t go Vegas with your college friends this weekend, because you really aren’t “fine.”  If you say “I’m fine,” people may assume you’ve recovered from your illness, because they haven’t grasped the concept of “chronic” illness.

Given how complicated this simple question can be, we asked patients how they deal with the “how are you?” question. Humor and vagueness seem to be popular choices.

“Hanging in there.”
“I’m not dead yet!” in your best Monty Python voice.
“Cured! Just kidding.”
“Meh.”
“No comment.”
“Today is a good day.”
“Good days, bad days.”
“Some days are better than others.”
“The same, but staying positive.”
“Do you want the real answer, or the polite answer?”
“Don’t ask, don’t tell.”
“Same —-, different day!”
“Blessed to be here, but I still feel like —-.”
Ignore the question and ask them how they are doing.
Say “how you doing?” like Joey from friends.  Crack a joke and avoid answering!

However you chose to respond, just be thankful that someone cares enough to ask you!

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Dysautonomia International asked our community to give us their best tips for college students with dysautonomia.  Here are the top 10 tips.

“We’ve learned for my daughter with POTS, no early morning classes to give her time to “get going.” We also met with Student Disability Services at her college– they were so helpful! She’s been able to use a Live Scribe pen that records the lectures as she writes to be able to reference back to the class at the times “brain fog” kicked-in. Her classes are also spaced apart so she doesn’t have to rush so much from one class to another. She’s also able to have water and Gatorade with her in class. We’ve learned a lot together through it all!” -Caryn Williams

 “Talking to your teachers at the beginning of the quarter/semester is a must in my opinion. I always showed up in their office the first week of classes. I would made copies of my doctors’ notes for them and offer it to them. Some took it, and some didn’t. I would briefly explain my condition and allow them to ask questions if they wanted. If I was having trouble finishing a paper on time due to brain fog or a bad flare up I would email my teachers and let them know before the paper was due. 95% of the time the teachers would volunteer to let me turn in it late, or make some other arrangements for me. It’s also really helpful if you can make friends in each class and exchange info that way they can let you know what you missed if you aren’t able to be there.” -Heather Applebury

“I found that if I study whenever I could and never crammed. I could always get enough sleep. I graduated Magna Cum Laude in Physics. Brain fog isn’t impossible!” -Lorin Bales

“Let go of expectations. It’s impossible to do all of the things people expect of you and all of the things you expect of yourself without becoming completely exhausted. Going through college with POTS is hard, and it’s ok if you can’t do everything. Don’t feel bad if you need to miss class, can’t go out with friends, or even have to take some time off. Chances are, you’re still doing a great job.” -Rachel Leeds

 “Always carry a giant water bottle and salty snacks with you.” -Emily Coday

“I start all my assignments super early. That means even opening a word document and typing the header for a paper if I’m feeling absolutely terrible. It helps me gauge how much I have to do.” -Zack Orban

“Be careful about drinking alcohol — IF you have your mind made up that you are going to, drink at least 8oz of water for every alcoholic beverage.” -Maggie Clore

“Use a roll-around backpack for those heavy books and fluids.” -Lorin Bales

“Seek support from your school’s counseling center. Navigating college with chronic illness can be quite draining at times, and it is very important to take care of your mental health. Access to the counseling center is included in your tuition, so it cannot hurt to check it out! Sometimes having someone to talk to can make all the difference.” -Cassidy Celeste

“Before the school year begins or as soon as the semester begins, meet with the campus health clinic staff to talk to them about dysautonomia or POTS. Let them know you may not need their help managing your dysautonomia or POTS, but if you do, you want to be sure they are familiar with the condition and comfortable providing the assistance you need. Give them contact info for your good dysautonomia doctor, if you have one, and give them some journal articles from Dysautonomia International’s website about your condition.” -Micha Freeland

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Seven years ago this week, I woke up sick with acute dysautonomia symptoms. I had no idea what was going on with my body and it was rather terrifying. Life’s challenges teach us the greatest lessons, so I decided to write my 2010 self a letter sharing some of what I have learned so far.  -Lauren Stiles

Dear January 2, 2010 Me,

You went to sleep last night after a thrilling day of skiing and dancing until the wee hours of the morning, laughing to the point of exhaustion with good friends and loved ones. You had a nearly perfect day. But something terrible is about to happen. It won’t make sense to you at first, but the snowboarding concussion you sustained two days ago is about to wreak havoc on your whole body for years to come.

By the end of this week, you won’t be able to stand up without fainting. You will have trouble breathing, stabbing chest pains, and your GI tract will essentially stop working. Don’t be afraid. You will be OK, eventually, but you are about to begin a difficult journey. Dig deep into your soul to find your strength and resilience, because you’re going to need it.

Over the next two years, you will get to know the ceiling tiles in the local Emergency Room quite well. You will go to many doctors asking for help, but most of them will not help. Some won’t know how to help you, despite their best efforts. Others will cast doubt on you, suggesting that your symptoms are “all in your head.” Do not waste your limited energy being angry with them or trying to change their minds. This is a reflection of their ignorance. You deserve better. Keep searching until you find doctors who believe you, who want to help you, and who have the expertise needed to help you. You will find them, eventually. Do not give up searching for answers, even when you are told to do so.

Trust your gut instincts. After being told over and over again that you are wrong, you will have feelings of self-doubt, but do not let anyone take away your self-confidence. Everything that you feel in your gut turns out to be correct. Remember than no one knows your body better than you do. You’ve lived in it for 31 years.

As weeks turn into months, you will go from a curvy size 12 to a barely size 2. At first, you won’t mind having to borrow trendy clothes from your younger, skinnier sister. But soon you will realize this is not a healthy weight loss. Your GI tract will not properly absorb nutrients or fats. Always a hearty eater, you will enjoy increasing your caloric intake to 4,000 nutrient dense calories per day – loading up on beans, peanut butter, almonds, meat, protein shakes – it doesn’t matter, you will keep losing weight. Your doctor will assume you have an eating disorder, even though you are doing everything humanly possible to gain weight. Your hair will start falling out, but you will get it back, eventually.

As the months wear on, you will find out who is a true friend and who is merely window dressing.  While it is certainly unpleasant to learn that you do not really matter in the lives of some people you thought you mattered to, consider this a blessing. In your life, version 2.0, you will be able to focus on relationships that bring you as much joy as you put into them.

Your love of science will play an important role on this journey. Ignore those who tell you to stop reading medical journals, and those who insinuate that you are not intelligent enough to understand what you are reading. Not only will your insatiable curiosity lead to you figuring out your own diagnosis, it will lead to you conducting medical research and publishing journal articles. You won’t believe this right now, but you’re going to lecture at Harvard Medical School someday. Keep reading. Keep asking questions. Do not be afraid to venture into the intellectual unknown.

Since it will be hard for you to sit upright or walk, your body will become very deconditioned, and this will make you feel much worse. Reversing this will be one of the hardest things you’ve ever had to do, and it will be a constant battle to prevent it from returning. The sooner you get started, the better. People will tell you to push yourself, and you will get very annoyed at them, because you think they don’t understand. They may not understand, but I do, and I’m telling you they are correct. You will never get where you want to be if you don’t push yourself with every ounce of your being. After you get your strength back, you will have to learn when to push and when to rest. It is not something that can be taught, at least not to you, because you are stubborn like your grandmother.

You will feel as though your world is falling apart, and it will. This illness will place tremendous burdens on your health, your marriage, your family, your career, your finances, and your social life. Life as you know it will be shattered, and you will have to work very hard to put the pieces back together again. Every piece of your life you reclaim will feel like a little victory. This will teach you to appreciate every blessing in your life; every moment will feel like a gift. You will rejoice at simple things that once seemed like a chore. The first time you are able to go food shopping by yourself again, you will find yourself crying tears of joy in the produce aisle. You will learn to appreciate the ants crawling in the grass on a sunny day. Sitting in your garden will preserve your sanity when you can do little else.

Your dog will be your most loyal friend during this whole ordeal. She will lay by your side day and night, giving extra kisses and snuggles when you are blue. She will keep you company when you need it. You will feel very alone at times, but you will eventually meet many new people along your journey. You will find a second family of people just like you.

When you can no longer practice law as you once did, you will feel as though you have lost your identify. You will always be a lawyer, but this identify crisis will help you figure out who you really are. At first, without the hustle and bustle of your former life, you will feel like nothing. But everyone is something, and that something is entirely up to you.

You will learn another hard lesson – that improving your health is largely in your own hands, even when you have the best doctors and best medicine available. This is an intimidating and at times frightening responsibility to accept, but the sooner you embrace it, the sooner you will realize how empowering it is.

You may not believe me for some time, but I promise this gets easier. Let go of the past, because you can’t get it back. Look towards the future and create new goals for yourself. Be thankful for the good things in your life, and no matter what happens, just keep swimming.

Love,
January 2, 2017 Me

PS – Don’t eat your mother’s meatloaf on August 14, 2012. Trust me.

PPS – At the risk of creating a galaxy destroying paradox in the space-time continuum (which we learned about in Back to the Future), I’m going to save you from two years of misdiagnosis hell and let you know that your concussion caused POTS and Sjogren’s. Find an autonomic neurologist named Kamal to get a proper diagnosis, and learn to love salt.

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We all know that Santa Claus visits millions of children around the world on Christmas. But what about his health? How is he doing?

Santa’s medical chart says he’s a 1,746 year-old married male with a jolly disposition.

He consumes an excessive amount of cookies and milk at least one night per year, but his big black belt with a few extra notches suggests he’s probably a cookie fiend all year long. While Santa’s big belly is part of his lovable charm, his extra weight puts him at risk of hypertension and diabetes. 25% of all diabetics develop autonomic neuropathy, especially people who have had diabetes for a long time (like 1700 years…).

Santa may be of Scandanavian descent, which puts him at higher risk of developing celiac disease. If Santa has celiac disease, those cookies will turn him into a jolly old ball of inflammation that can lead to autonomic neuropathy.

Santa’s red flushed face may be simply due to the cold wind he encounters while flying around the globe at high speeds. However, it could also be mast cell activation syndrome, which can occur with some forms of dysautonomia. We think he needs an appointment with Dr. Lawrence Afrin, and in the meanwhile, he may want avoid MCAS triggers (especially reindeer poop!).

Santa was a smoker for the first 1700 years of his life. He quit in the 1980s. Before this, he was often seen with a pipe. Smoking increases the risk of hypertension, stroke and heart disease – all of which involve some element of autonomic dysfunction. His friend Frosty the Snowman still smokes sometimes, exposing Santa to second hand smoke. And let’s not forget the exposure to chimney soot that Santa breathes in every year! Dr. Svetlana Blitshteyn suggests that Santa see his doctor to get screened for lung cancer, given his 1700 year history of smoking and chimney soot exposure. She notes that in rare cases, some forms of lung cancer can cause paraneoplastic syndrome, which can cause dysautonomia.

Santa says his heartbeat feels like jingle bells. Since the heart rhythm is set by the autonomic nervous system, this may be a form of dysautonomia. Santa’s cardiologist ordered a 24-hour Holter monitor to keep an eye on things as he delivers presents this Christmas, but Santa’s insurance company denied coverage for the test. We know who’s going on the naughty list this year!

When Mrs. Claus came down with the same jingling heart condition, the doctor at Snowy Hills Hospital emergency room told her there was nothing wrong and it was all in her head.

Prancer wanted to leave a special present on that doctor’s windshield in honor of Mrs. Claus and all of the female elves who have been treated the same way at Snowy Hills Hospital, but Rudolph convinced him that hosting a physician education course with Dysautonomia International at Snowy Hills Hospital was a better way to educate doctors about jingle heart syndrome and other forms of dysautonomia. Dr. Blair Grubb, being the first to discover jingle heart syndrome when he was four years old, will travel to the North Pole next year to teach the doctors at Snowy Hills Hospital about this complicated and often misdiagnosed condition.

While Santa’s tests results are always normal and everyone says “he looks fine,” he has several risk factors for developing dysautonomia.

You can do your part to keep Santa healthy! Skip the cookies and milk this year, and leave him organic locally-grown free-range kale chips and freshly pressed home-grown almond milk. #KeepSantaHealthy #KaleNotCookies

Happy holidays from all of us at Dysautonomia International! We wish you and your family a joyful holiday season and a happy, healthier new year!

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