In 2019, Dysautonomia International’s POTS Research Fund received applications from researchers in nine countries seeking over $6.1M in research grants. Thanks to our amazing fundraising volunteers and donors, we are able to fund over $800,000 in POTS research grants this year! You can help support these grants and future research by making a contribution at CurePOTS.org.

It’s very difficult choosing the studies to fund, as we received so many great applications and we want to fund everything that will help advance our understanding of POTS and find better treatments for patients. We use a rigorous two-step peer-reviewed scoring system to help identify the most promising applications. All applications are reviewed by four independent scientists, two patients or caregivers, and our Board of Directors, prior to funding.

Our 2019 grant recipients are…

Dr. Artur Fedorowski, Lund University (Sweden)
Head-to-head comparison of cell-based functional assay vs. epitope-based ELISA method for detection of GPCR-autoantibodies in postural orthostatic tachycardia syndrome

Dr. Raffaello Furlan, Humanitas University (Italy)
Long-term effects of transcutaneous vagal nerve stimulation on symptoms and cardiovascular autonomic profile of patients with postural orthostatic tachycardia syndrome (POTS)

Dr. Katja Kovacic, The Medical College of Wisconsin (United States)
Optimizing Vagal Efficiency to Improve Gastrointestinal Function in POTS: Effects of Auricular Neurostimulation

Dr. Laura Pace, University of Utah (United States)
Altered Nitric Oxide Metabolism in POTS

Dr. Satish Raj, University of Calgary (Canada)
Cardiac Structure and Function in Postural Orthostatic Tachycardia Syndrome: A Cardiac Magnetic Resonance Study

Dr. Robert Sheldon, University of Calgary (Canada)
A Randomized Cross-Over Study of Propranolol Versus Ivabradine in Postural Orthostatic Tachycardia Syndrome

We also funded a study earlier in 2019…

Prof. Lauren Stiles, Stony Brook University (United States)
Dr. Jonas Axelsson, Karolinska Institutet (Sweden)
Dr. Artur Fedorwoski, Lund University (Sweden)
Immune-Phenotyping in Individuals with Postural Orthostatic Tachycardia Syndrome (read more about it)

We’ll be sharing more information on each of these studies in the coming weeks and we’ll share info on how you can volunteer as a study participant for some of the studies. In the meanwhile, please contribute to the POTS Research Fund if you can and ask your friends and family to do the same at CurePOTS.org. By pooling our donations together, small and large, we can advance the pace of research and get us closer to finding better treatments for millions of people around the world living with POTS.

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Each October I find myself inspired and empowered by the amazing work Dysautonomia International and the entire dysautonomia community does to raise the profile of illnesses of the autonomic nervous system. Awareness Month is an incredible tool to gather the collective power of this movement and elevate our stories in service of change. It’s encouraging to see others learn about dysautonomia and the impact it has on the lives of patients, caregivers, family, friends, and doctors. 

With each passing Awareness Month I feel more seen and understood, but I also wrestle with the pain of reflecting on life with POTS. Overall, I’ve gotten better at sharing my personal story without feeling the weight of it each time. But something about Awareness Month – the intensity of it and the many stories I hear of others suffering from the same senseless illness – brings a surge of sadness into the fore. Adding to that, October 1st is my “sickiversary” – the date in 2007 when I sustained a concussion triggering the onset of POTS. Each October, I find myself making a tally of the years I’ve been sick with POTS, 12, and of the years I’ve been diagnosed, 5. Those numbers stare at me and I stare back, knowing the pain, loneliness, and desperation that filled them. I reflect on those years not from the security of distance, but while feeling their presence. I remain consumed by the daily battle of life with POTS along with many co-morbid conditions. 

When I fall into this negative reflective spiral, I buoy myself by thinking about all the progress Dysautonomia International and this movement have made in a few short years. The diagnostic delay is down from 6 years 5 months to 4 years 2 months, and still improving. Fundraising is increasing and research is gaining speed. Volunteers have organized POTS walks around the country – from Boston and Philadelphia to Milwaukee and Greensboro. Lobbying and media efforts have started elevating dysautonomia in the public consciousness. Buildings have lit up across Australia, Malaysia, Japan, Canada, the United States, and beyond to #MakeNoiseForTurquoise. All of this signals a better future for the 70 million of us with dysautonomia.

Generally, thinking about this progress is enough to lift me up and propel me forward with renewed energy. But this year I found myself stuck. I began searching for a way to get out of the rut. I came to see that while my sadness is valid, it is not the complete picture. At the front of my mind there is a list of things POTS has taken from me, but hidden away there is also a list of things POTS has given me. I tend not to focus on the positives because it feels counterintuitive – why would I celebrate any outcome of being sick? But I realized I could acknowledge that good things have come from being sick without being happy that I got sick. So I started compiling positives and the weight began to lift. 

Creating this list helped me see that things aren’t as black and white or as good and bad as my mind likes to tell me they are when I’m down. Knowing I’m not alone in trying to make sense of life with dysautonomia, and discovering that this list helped me find some solace, I thought I’d share it. I’m hoping it may help others see bits of good that in their own dysautonomia and chronic illness experiences.

POTS has given me: 

• Resilience: Living life with a chronic illness has absolutely made me stronger. Surrendering to the daily uncertainty of POTS has equipped me with the tools I need to respond to adversity. I now see my abilities to endure and adapt as two of my greatest strengths.
• Mental health: I began therapy because of the impact being sick had on my mental health, but therapy has helped me cope with far more than my illness. It has enriched my life by teaching me how better to confront and unpack things. It’s made me more emotionally intelligent and strengthened my relationship with myself and others.
• Purpose: It took seven years for me to get diagnosed with POTS and I know my story is not unique. Knowing that millions of others were also struggling with this common but little known illness made me angry. That anger fueled a drive to speak out and fight for change. So I became an advocate and found the power that flows from vulnerability and the energy that comes from joining a movement.
• Authenticity: As a kid I struggled to be myself and often felt uncomfortable and uncertain. But the past 12 years of being sick have helped me shed that layer of insecurity. Speaking out about my experience and publicly sharing intensely personal and sometimes unflattering aspects of my life has numbed the feeling of self-consciousness. In its place I’ve found self-assurance, which has freed me of so many trappings.
• Community: POTS has given me a reason and a means to connect with others. I’ve met many incredible POTS and chronic illness warriors who have enriched my life. I’ve also received so much support and kindness from friends, family, and strangers. The fight against POTS is truly a movement, and this movement fills me with love and strength.
• Family time: I am lucky to have the unwavering support of my family. They’ve battled this shared enemy with me, and have shown me the meaning of devotion, selflessness, and love. Being sick has given us time together that we wouldn’t have otherwise gotten. Though that time is often spent in doctor’s offices, at my bedside, over SCIG infusions, or trips to the pharmacy, I’m grateful for it. 

What would be on your list? I’d love for this to be the start of an ongoing conversation that helps us inspire and lift each other up. This process won’t make the bad go away, but maybe it’ll make us all feel the good just a little bit more. And I think we’ve earned any happiness we can find, right?

Guest blogger Hanna Rutter Gully is a proud member of Dysautonomia International’s Patient Advisory Board and a self-proclaimed hair dye addict. She’s tried to live life to the fullest despite the presence of many unwelcome companions, including POTS, gastroparesis, MCAS, chronic migraine, joint hypermobility, post concussive syndrome, and an autoimmune disorder. Her favorite part of managing these conditions is her morning coffee, and her least favorite part is everything else. 

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Next weekend Dysautonomia International will launch one of the most in-depth immunological studies in POTS to date during our 7th Annual Conference in Philadelphia! Titled “Immune-Phenotyping in Postural Orthostatic Tachycardia Syndrome,” the study takes a deep dive into possible immune mechanisms in POTS. You can support this important research by making a contribution to our POTS Research Fund at CurePOTS.org.

We’ve put together some FAQs about this year’s study.

Who is running this year’s study?
After helping researchers from Vanderbilt University, Mayo Clinic, UT Southwestern and other universities organize the annual Dysautonomia International Conference research study for the past five years, Dysautonomia International founder and President, Lauren Stiles, will lead this year’s study. Lauren was recruited to serve as a Research Assistant Professor of Neurology at Stony Brook University’s School of Medicine last year to help the university expand its autonomic disorders research, education and clinical care. She will be joined by co-investigators from Sweden, Dr. Jonas Axelsson, Medical Director of the Center for Apheresis and Stem Cell Handling at the Karolinska Institutet Hospital, and Dr. Artur Fedorowski, Senior Consultant for the Department of Cardiology and Head of the Syncope Unit at Skåne University Hospital. Drs. Axellson and Fedorowski have teamed up on several prior POTS studies that found interesting immunological results, and they have set up the leading POTS research program in Europe. The study team also includes incredible young researchers from Penn State Hershey, Rush University, University of Calgary, and Columbia University who are forging a career in medicine and academic research after their own experiences with POTS.

What are they studying?
During the conference, the research team will screen 100 POTS patient volunteers for the following:

• HLA genetic markers: these are genetic markers that regulate the immune system;
• immune cell phenotyping:  B-cells, T-cells and NK-cells from collected peripheral blood mononuclear cells will be assayed with flow-cytometry with labelling according to the Freiburg (CD19, CD21, CD27, IgM, and IgD), FITMAN (CD45, CD4, CD8, CD45RA, CD27, CD69 and HLA-DR) or NK-panel (CD16, CD45 and CD56,), respectively;
  
• whole-tissue reactivity analysis: serum will be assessed for potential reactivity in routine clinical immunofluorescence assays for neuronal, pemphigoid and adrenal gland antibodies;
• novel calcium-mobilization assay: serum samples will also be tested using a novel, proprietary ELISA assay to quantify the amount of IgG reactive to calcium-binding protein;
• antibodies & immune markers associated with Sjögren’s syndrome: nRNP/Sm, Sm, SS-A, Ro-52, SS-B, Scl-70, PM-Scl, Jo-1, centromere protein B, PCNA, dsDNA, nucleosomes, histones, ribosomal P-proteins, AMA and M2;
• antibodies associated with autoimmune encephalitis: NMDAR, AMPAR, GABAR, LGI1, CASPR2;
• antibodies associated with neuromyelitis optica: NMO, AQP4;
• antibodies associated with polyneuropathy: GM, GM1, GM2, GM3, GD1b, GQ1b;
• antibodies associated with myasthenia gravis: muscle AChR; and,
• urine screening for albuminuria, hematuria, leukocyturia, nitrate, sodium, potassium, magnesium, chloride, creatinine, urea and pH.

Thankfully, the researchers only need two tubes of blood and a small urine sample to run all of these tests. They will also conduct 10-minute bedside orthostatic vitals, a Beighton exam to screen for joint hypermobility, a medical history interview, and a survey to capture other information about the patient’s health and family history.

After the conference study is done, any remaining blood, serum and urine specimens will be stored in a biobank at the Karolinska Institutet for future studies analyzing other biomarkers of interest in POTS. Dysautonomia International has already been contacted by other researchers seeking access to this biobank material. Biobank specimens will be stored in a de-identified manner, meaning that the identify of the individual who provided the specimen remains anonymous. This is designed to protect patient privacy.

Why are the researchers studying these biomarkers?
Prior research suggests that a majority of people diagnosed with POTS have an autoimmune problem that may be causing or contributing to their symptoms. Almost every autoantibody that has been studied in POTS has been found in a higher percentage of POTS patients than it is found in the general population, but we really don’t know why that is and what other antibodies may be involved. The conference study is designed to dig a little deeper and search a little broader for immunological biomarkers in POTS, to get a bigger, and hopefully clearer, picture of what’s going on.

This review article provides a good summary of what has been found to date regarding autoimmunity in POTS, although even more research on autoimmunity in POTS has published since that review article came out in December 2018. There are two recent articles of note.

The first, a study finding that a subset of Korean POTS patients have HLA genetic markers highly associated with the development of autoimmune disease, also finding beta2 adrenergic receptor antibodies in these patients, and noting that two of these patients who received immunotherapy responded well to it. HLA markers can vary by race and ethnicity, so it’s important to search for these markers in other races and ethnicities to see if it’s a common finding amongst POTS patients of all backgrounds.

The second, a study from Dr. David Kem’s lab at the University of Oklahoma confirming a much higher rate of adrenergic receptor antibody activity in POTS patients compared to healthy people (the samples were collected during our 2014 Conference).

Inside scoop for our blog readers… we expect to see another important autoimmune POTS paper coming out in the next month or two.

How can I participate in the conference study?
Study enrollment will be open to the first 100 registered conference guests who volunteer to participate in the study and meet the enrollment criteria below. Please note, the conference is sold out and there are no volunteer or scholarship passes remaining. Study enrollment will begin at 6pm on Friday evening in the main hotel ballroom. The research team will be available to answer your questions and sign you up if you’re interested in participating. The actual study procedures will take place on Saturday and Sunday during the conference. Registered conference guests will receive an email this week with a detailed schedule.

Inclusion Criteria
· Individuals previously diagnosed with POTS by a physician
· Ages 12-80 years
· Male and female subjects are eligible
· Able and willing to provide informed consent (if ≥18 years) or assent with parental consent if age 12-17 years

Exclusion Criteria
· Inability to give, or withdrawal of, informed consent
· Use of immune modulating treatments within the prior 6 months
· Women who are or may be pregnant
· Other factors which in the investigator’s opinion would prevent the subject from completing the protocol

Study volunteers do not need to stop any of their medications, nor do they have to bring medical records to the conference. The study will be performed while the participants are dressed in their normal clothing, but the researchers will ask volunteers to remove any compression garments they wear before they arrive in the study room, because these garments can impact orthostatic vitals.

Will study participants get their lab results?
The researchers can share results from HLA marker and antibody analyses if study participants choose to receive them. However, they cannot provide clinical interpretation of any of the results.

When will the results of the study be publicly available?
The researchers will move as quickly as possible to complete the study and publish the results, but it can take more than a year to published a detailed research paper like this. We will share the eventual journal article through Dysautonomia International’s social media channels and email list as soon as it’s available.

How is this research being funded?
This research is being funded through Dysautonomia International’s POTS Research Fund as well as some grants from the Swedish government. You can support this work and other critically-needed POTS research by making a contribution at CurePOTS.org.

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“If we want an answer from nature, we must put our questions in acts, not words, and the acts may take us to curious places. Some questions were answered in the laboratory, others in mines, others in a hospital where a surgeon pushed tubes in my arteries to get blood samples, others on top of Pike’s Peak in the Rocky Mountains, or in a diving dress on the bottom of the sea. That is one of the things I like about scientific research. You never know where it will take you next.”  — J.B.S. Haldane
From essay ‘Some Adventures of a Biologist’, as quoted in Ruth Moore, Man, Time, And Fossils (1953), 174

While not dressed as suggested by Dr. Haldane, I recently joined a massive expedition
intent on making new scientific discoveries. Working with an international group of
colleagues, I screened blood samples from 113 Swedish individuals with POTS and 283
people who don’t have POTS (controls) in search of one or more biomarkers.
Biomarkers are molecules present in a biological sample at concentrations that are
clearly different between patients and healthy people. Ideally, a biomarker would also
be more abnormal in more severe disease states, and closer to normal as a patient’s
symptoms improved or went in remission. In this particular case, we were hoping to
identify a biomarker that is as reliable and specific as the tilt test for identifying POTS,
so that someday, perhaps, POTS can be diagnosed by a blood test rather than the tilt
test. We used a new testing approach called Proximity Extension Assay, which allows
us to measure concentrations of 57 human protein biomarkers in a single sample
thanks to new DNA technology.

So, did we catch anything? The answer is yes, although we are still trying to puzzle out
the implications. We found one protein that was significantly less common in the blood
of POTS patients than in the blood of controls – furin. This protein was found in much
lower concentrations in POTS patients than in controls, but was also less abundant in
the blood of POTS patients with more severe POTS on tilt testing than in those with
milder POTS.

Furin promotes the maturation of secreted chemical messengers at the cell surface.
Furin is found throughout the body and has been reported to process a large number of
cytokines and chemokines, including anti-inflammatory transforming growth factor
(TGF)-β1 and pro-inflammatory secreted TNF-family members. Cytokines and
chemokines play important roles in the immune system.

Interestingly, previous evidence has suggested that inhibition of furin may result in a
breakdown of peripheral immune tolerance (Pesu et al., 2008) and development of
systemic autoimmune disease (Lisi et al., 2010). Recent findings report low furin levels
correlate to worsening systemic disease activity in Sjögren’s syndrome (Ranta et al.,
2018). It is important to note that only one POTS patient in our series had a confirmed
autoimmune disease, so there is much we still have to learn about the immune system
in POTS.

So how does this help us diagnose and treat POTS? Well, if our findings are replicated
in other populations, a furin blood test may assist in diagnosing POTS in the future. It
may also be that POTS patients with a very low furin may respond in a different way to
certain treatments than do those with more normal levels of furin. There is much
research to be done exploring why POTS patients have low furin levels, and how this
impacts their immune system.

As said so well by Dr. Haldane, “If we want an answer from nature, we must put our
questions in acts, not words…”! This is what I intend to do, continuing now from the
bottom of the sea to the next curious place. Stay tuned!

Guest blogger Jonas Axelsson, MD, PhD is the Director of the Center for Apheresis and Stem Cell Handling and an Associate Professor of Renal Medicine at the Karolinska Institutet in Sweden. He is interested in studying the immune system in POTS, ME/CFS and other conditions. He will be a guest speaker at the Dysautonomia International 7th Annual Conference this summer, where he will also be conducting a research study exploring even more immune and genetic biomarkers in POTS. When he’s not trying to figure out complicated diseases in the lab, he enjoys sailing, diving and photography.

REFERENCES
Spahic, J., Ricci, F., Aung, N., Axelsson, J., Melander, O., Sutton, R., Hamrefors, V., and Fedorowski, A. Proconvertase Furin Is Downregulated in Postural Orthostatic Tachycardia Syndrome. Front. Neurosci., 29 March 2019. doi.org/10.3389/fnins.2019.00301
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Pesu, M., Watford, W. T., Wei, L., Xu, L., Fuss, I., Strober, W., et al. (2008). T-cell-expressed proprotein convertase furin is essential for maintenance of peripheral immune tolerance. Nature 455, 246–250. doi: 10.1038/nature07210
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Lisi, S., Sisto, M., Lofrumento, D. D., Cucci, L., Frassanito, M. A., Mitolo, V., et al. (2010). Pro-inflammatory role of Anti-Ro/SSA autoantibodies through the activation of Furin-TACE-amphiregulin axis. J. Autoimmun. 35, 160–170. doi: 10.1016/j.jaut.2010.06.020
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Ranta, N., Valli, A., Gronholm, A., Silvennoinen, O., Isomaki, P., Pesu, M., et al. (2018). Proprotein convertase enzyme FURIN is upregulated in primary Sjogren’s syndrome.Clin. Exp. Rheumatol. 36(Suppl. 112), 47–50.
Google Scholar

Piguet, V., Wan, L., Borel, C., Mangasarian, A., Demaurex, N., Thomas, G., et al. (2000). HIV-1 Nef protein binds to the cellular protein PACS-1 to downregulate class I major histocompatibility complexes. Nat. Cell. Biol. 2, 163–167. doi: 10.1038/35004038
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Guimont, P., Grondin, F., and Dubois, C. M. (2007). Sox9-dependent transcriptional regulation of the proprotein convertase furin. Am. J. Physiol. Cell Physiol. 293, C172–C183. doi: 10.1152/ajpcell.00349.2006
PubMed Abstract | CrossRef Full Text | Google Scholar

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Compression garments are a common treatment for individuals with POTS, but why are they recommended, and how exactly do they work?

What happens when you stand up?

When a person stands up, gravity pulls blood from the upper chest down into the abdomen and legs.  As a result, there is less blood getting back to the heart.  This is a problem because the heart is not able to pump blood as effectively to the body.  The body detects these changes and activates the “fight or flight” response, or sympathetic branch of the autonomic nervous system, to increase heart rate and squeeze the blood vessels in the body to help blood get back to the heart.

When a healthy person stands up, they may experience a brief increase in heart rate, or decrease in blood pressure, but this usually isn’t noticeable because the body quickly adapts to the positional change.  However, in a person with POTS, the body’s ability to regulate this response to standing is disrupted.  An abnormal amount of blood collects, or pools, in the abdomen and legs, and blood does not get back to the heart very efficiently.  This leads to unpleasant and common POTS symptoms including lightheadedness, dizziness, shaking, chest pain and nausea.

How can compression garments help?

The body’s response to standing is where the theory of compression garments comes into play.  In a healthy person, when the sympathetic nervous system is activated, blood vessels in the body squeeze to get blood back to the heart.  However, in individuals with POTS we think there is still too much blood that is collecting in the abdomen and legs and not getting back to the heart.  What if we could intervene and mimic the squeezing of blood vessels with an external garment?  If we can provide mechanical squeezing to the abdomen and lower body, helping blood get back to the heart, then the heart doesn’t have to work as hard.  Compression garments do just this.  When applied to the body, they exert a force which pumps the pooled blood in the legs and abdomen back up to the heart.  Once the heart is getting enough blood, it doesn’t have to beat as fast to try and keep up with the body’s demands. The sympathetic nervous system reduces its activity and heart rate slows down.

POTS and Compression Garment Research :

Although compression garments are commonly prescribed for people with POTS, there is no research in an adult POTS population demonstrating how they work, and as well, which type of garment is best to manage POTS symptoms and lower heart rate.  Compression garments vary in terms of the strength of compression (measured in mmHg) and style, including socks, shorts and waist high tights.

I am currently conducting a clinical trial to understand more about how compression garments work.  This research is studying the use of compression garments in POTS to help minimize blood pooling, and in turn lower heart rate and symptoms.   I am using a non-inflatable lower body compression garment made of neoprene and Velcro, like a wetsuit.  This garment can be done up in different segments compressing all or part of the lower body. This garment serves as a good model compression garment for research because of the segments, and because multiple people of different sizes can wear the same garment.  However, it isn’t something a POTS patient would wear in real life.  Instead, we can translate the research findings from this garment to actual commercial garments like socks, shorts or waist-high tights.

In this study, I use a head up tilt table test to simulate standing.   When held upright on a tilt-table, the leg muscles that would normally help blood get back to their heart, are not engaged.  With this, we are measuring the body’s ability to manage standing without the leg muscle pump, as well as the action of the compression garments on the body.  During my study, the participants wear the compression garment done up in 4 different configurations for 10 minutes each, for a total of 4 tilt table tests.  The 4 configurations are: no garment, lower leg only (like a compression sock), upper leg/abdomen only (like compression shorts) and full lower body compression (like waist-high tights).

During the tilt table tests, I measure participants’ blood pressure, heart rate and symptom scores both lying down and upright.  From this data we can calculate how blood is flowing through the heart and blood vessels, which helps us understand how the body is responding to standing.   I am also measuring blood flow to the brain using ultrasound to determine whether or not compression garments affect blood flow to the brain, in addition to their possible heart rate and symptom effects.

Once this study is complete, we will be able to demonstrate whether or not compression garments are effective at lowering heart rate and improving symptoms in individuals with POTS and as well, if effective, which style/type of garment is best.  These findings can be used to help doctors recommend the best type of compression for management of POTS symptoms.  It may also provide evidence to aid in receiving insurance coverage for these garments.

Guest author, Kate Bourne, B.Sc., is a Cardiac Science Graduate student in Dr. Satish Raj’s Lab at the University of Calgary in Alberta, Canada.

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I sit before you today asking for your support of Dysautonomia International so that one day, I’ll be able to stand before you.

When I was 18, my doctor diagnosed me with a debilitating, chronic medical condition called dysautonomia. Currently, there is no cure. Dysautonomia means that my autonomic nervous system doesn’t work. Therefore, my body cannot regulate things like my heart rate, my blood flow, my breathing, or my digestion. This means that every minute of each day, my body is overworking to try to compensate. This leads to symptoms such as fatigue, headaches, nausea, reduced concentration, chest pain, and shortness of breath.

More importantly, it means that I can’t stand for more than a few minutes without fainting. It means that I need at least 12 hours of sleep each night. It means that I burnout after about two hours of concentration. It means that things you don’t even think about doing are nearly impossible for me. Things like standing in line, showering, running to catch a bus, or walking up stairs.

Dysautonomia means that I will never again be able to attend a standing-room only event. It means that I will never again be able to take a dance class. It means that I will never be able to travel around the world. Or hold a full-time job. Or raise a big family.

Given all this, you may think that the day I learned I have dysautonomia was the worst day of my life. That couldn’t be farther from the truth.

For a time before my diagnosis, I was feeling sick. But no one knew what was wrong with me. Because I couldn’t eat without becoming nauseous, I was 110 pounds. So my doctor was ready to diagnose me with anorexia and refer me to a psychiatric hospital.

I was one of the lucky ones. A week later my doctor diagnosed me correctly and I started to get the care I needed. Plus, in dysautonomia time, a few months before a diagnosis is nothing. My friend Kate received her diagnosis ten years after her symptoms started. Some people never receive a correct diagnosis. I have friends with dysautonomia who received a diagnosis of Munchausen syndrome. Of Histrionic Personality Disorder. Of Bipolar Disorder. Some people are told that they are just making it all up.

None of this would happen if more people, especially health professionals, knew about dysautonomia. That’s why Dysautonomia International exists. Dysautonomia International works to raise awareness of dysautonomia within the medical profession. It provides accurate information to practitioners on the latest diagnostic methods and treatment options available. It also works to increase awareness and recognition of dysautonomia amongst the general public.

In the three years I’ve lived with dysautonomia, I’ve gone to the hospital 7 times. I’ve disclosed my illness to 28 professors. And I’ve shared my story with countless friends and family members. Not one of the doctors in the hospital, or professors at my school, or people in my life had ever heard of dysautonomia before.

Your support of Dysautonomia International means that next doctor that sees a girl with my symptoms will test her for dysautonomia. It means that the dysautonomic high school student needing accommodations won’t be told that their school doesn’t recognize dysautonomia as a valid disability. It means that the government won’t reject the dsyautonomic college graduate for disability aid. It means that one less parent has to fight with their insurance company to get their child’s dysautonomia medicine covered. It means that one day, dysautonomia will be curable.

Give to Dysautonomia International, and one day, I’ll be able to thank you with a standing ovation.

Guest Author, Samantha Steinfeld, 26, wrote this essay for a speech writing class. She was diagnosed with POTS during her freshman year at American University and with the support of her family, friends, and POTS community she was able to graduate from college and now works at a non-profit in Washington, DC. In the fall, she will begin a graduate program in clinical mental health counseling, which she decided to pursue after experiencing first-hand how much mental health services can help teenagers and young adults living with chronic illnesses. 

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Time for a little #SillySaturday dysautonomia humor…

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt (salt salt salt salt)

Yeah it’s pretty clear, I ain’t no size two
But I shake it, shake it, like I’m supposed to do
‘Cause I got that boom boom that always seems to race
Not enough blood, in all the wrong places

I ain’t like other girls, workin’ that low salt stuff
Some docs think this ain’t real
Wish I could make it stop
If you got tachy tachy just raise ’em up
‘Cause you gotta get blood flowin’ from the bottom to the top

Yeah my doctor she told me don’t worry about your hives
She says increase salt & fluids and everything will be alright
You know I won’t be no stick-figure silicone Barbie doll
So if that’s what’s you’re into
Then go ahead and move along

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, hey

I’m bringing saline baaaaaack
Go ahead and tell them naysaying doctors that
Hey no, I’m just playing, I know they think its wrong,
But it’s better to stand up than to be in bed all day long,

Yeah my doctor she told me don’t worry about your hives
She says increase salt & fluids and everything will be alright
You know I won’t be no stick-figure silicone Barbie doll
So if that’s what’s you’re into
Then go ahead and move along

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt
——–

To learn more about eating a high salt diet to help manage dysautonomia symptoms, visit our Please Pass the Salt blog post or dysautonomiainternational.org/salt.

Original “All About That Base” song by Meghan Trainor.

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It has been four years since receiving a diagnosis of postural orthostatic tachycardia syndrome (POTS) and I am still learning how to accept my illness and live life to the fullest. However, the past has been weighing me down. Especially when I reflect on the struggle of fighting for a diagnosis, so I wrote down everything that I wish I could say to those who have made my struggle harder. Here it goes…

Dear Dr. X – I wasted four years of my life because you wouldn’t listen to my symptoms. You couldn’t look past the extra weight that I carried to actually go over my history. To this day, I cannot believe you told a vulnerable 15-year-old girl that she was “too fat.” I told you I played soccer for 10 years and had to stop because of my symptoms. All I wanted was my life back. I knew something was wrong, and if you actually did your job, you could have told me that.

Dear Dr. W – I came to you after the other specialists turned me away. You blamed me for being sick. Then, when you said there was nothing wrong and not to come back… I fell into a very deep depression. My dream was to be a normal teenager again. I ended up inpatient at the pediatric psychiatric hospital at 16 years old because nobody believed me, including you, and I didn’t want to live my life like that. The nurse at the hospital knew it was POTS after describing my symptoms right away… my heart sank when you were the cardiologist waiting in my psych room to evaluate me. You STILL didn’t believe me and even blamed ME for not making a follow up appointment when you specifically said, “do not come back because there is nothing wrong” (your exact words and I know that because they are engraved in my memory to this very day.) Did you really think that it would be helpful to blame a 16-year-old who was already in the psychiatric hospital? I hope you never treat another patient like you treated me.

Dear High School English Teacher – In high school, when I wrote an essay about my invisible illness and depression, you told me nobody really cares. I used that same essay when I applied for a scholarship aimed towards students with disabilities. I proceeded to earn $5,000 for college because I wrote about my disability and experiences. Guess what, people did care and were actually inspired! I even got to go to a banquet and speak when accepting my scholarship. I hope you never underestimate the power of another student with a disability. Please just remember that you never know what that student is going through. You taught me many life lessons through this experience though, and I thank you for that!

Dear High School Gym Teacher – You were a very passionate gym teacher, but when I told you I was feeling lightheaded and had severe chest pains… you told me to keep participating. Just because I didn’t have a diagnosis, you thought I was just trying to get out of gym class. Why didn’t you believe me? I really wanted to be like every other kid. I wanted more than anything to participate, but my health wouldn’t allow me. You made me feel like my symptoms were all in my head. Well, it’s many years later and I finally have a definite diagnosis. I hope you learn to believe your students when they tell you they have real medical problems that could make it dangerous for them to engage in gym class. Please remember, some students have disabilities that are considered invisible illnesses which means that you may not be able to psychically see that they are sick.

Dear ER Doctor I saw the first night I passed out – No, fainting is not a normal teenage girl thing. I want to know why you didn’t run any tests or give me fluids when I came to you after passing out for the first time in my life. I might have been saved from years of suffering if you took my orthostatic vitals. I had chest pains and dizziness. Your answer… it’s normal for teenage girls. Really, because none of my friends have chest pains, dizziness, fainting, etc.?

Dear Family and Friends – I appreciate your support and I love you dearly, but it is time for you to stop telling me to look on the bright side or it could be worse! It’s very hurtful when you tell me to just try harder to stay out of the hospital because I am trying my very hardest. My hardest is never enough. I appreciate your concern, but you will send me flying off the rails if you tell me to drink more water one more time. I don’t know how many times I must tell you that I can’t drink because of my stomach pain and nausea. That is the reason why I get IV infusions multiple times a week. It feels like you are diminishing my pain and symptoms when you tell me that pain is all in your head… and that I control it. Really, because I would love for a migraine that is a 10 on the pain scale to just go away because I “thought” the pain away. There’s way more going on inside my body than you will ever know, so don’t give me medical advice that you googled. All I need from you is love and support, not advice and judgement.

Guest author Kalyn is 20 years old and living with postural orthostatic tachycardia syndrome. She hopes this will help inspire others to persevere as they fight for their own diagnosis. Kalyn enjoys spending her good days hiking and canoeing with her service dog by her side.

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Today, I turned 28, and next month I will mark 11 years of living with POTS (postural orthostatic tachycardia syndrome). Each year with POTS has brought different challenges, and I’ve grown to expect the unexpected. I’ve learned, as anyone with a chronic illness does, to endure and adapt. I prize these skills above all others because they enable me to live the fullest life possible while battling POTS. Despite my best efforts to soak up the good moments, and let the bad ones wash over me, I found 27 particularly trying.

Just before my 27th birthday, I was a passenger in a three-vehicle car accident. I sustained a concussion that triggered a POTS flare that sent my health spiraling to depths it had not been to in years. It stole from me the functionality I’d fought desperately to regain in the 10 years since developing POTS. I spent the first several months of 27 in acute recovery, and the rest of the year navigating exhausting ups and downs. In May, my doctor informed me that my autonomic system is the most reactive it has ever been since I was diagnosed in 2014, meaning my POTS is the worst it has ever been – even worse than when I was using a wheelchair. When people see me in public, or view posts on social media, I tend to appear functional. After being sick for more than a decade, I’ve gotten very good at presenting as “normal” while everything inside me is falling apart.

In the past, I have been vocal about my struggles with dysautonomia. I have used my story and my everyday experiences to convey to people the severity of this largely invisible illness that affects 1-3 million Americans. But this past year, I have found myself quiet as I reckoned with my evolving relationship with POTS and the fresh wounds it has created. 27 challenged my optimism and my strength. But I have hope that 28 will be different.

Why do I have hope? Because while I’ve been fighting my personal battle with POTS, the growing army of dysautonomia warriors has been fighting for me and for millions of others. This year has been the biggest yet for the movement, as we’ve made leaps forward in terms of visibility, awareness, and research. In December, Solange Knowles came out as having a form of dysautonomia. This spring, Tori Foles and her husband Nick Foles, Super Bowl MVP, joined the POTS movement – partnering with Dysautonomia International to push for increased fundraising and awareness. After Dysautonomia International organized the first Congressional Briefing on POTS, Congress, for the first time, directed the National Institutes of Health to “stimulate the field” of POTS research as part of the FY 2018 Omnibus Bill. And Dysautonomia International funded over $400,000 in POTS research studies this year, with many more studies in the pipeline.

This progress is humbling, but equally humbling is the enormity of the work in front of us. There are incredible doctors out there – like my own, Dr. Brent Goodman at the Mayo Clinic – who are educating their peers and conducting research to better the lives of those with dysautonomia. As of now, POTS remains a chronic illness with very few effective treatments and no cure. But it is within our power to find a cure – we simply need to continue funding research. Currently, more doctors are requesting funding for research than we have money to give.

That is why I’m asking all of you to help me mark my 28th birthday by signing up to walk in or donating to the 2018 Boston POTS Walk with Team Hanna G and Me,  or by creating your own team or donating at POTSwalk.org. All funds raised go directly to Dysautonomia International’s POTS Research Fund.

Here’s to another year of fighting to beat POTS! 

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