Exciting news from Dysautonomia International’s 6th Annual Conference, being held in Nashville, TN this weekend!
Tori and Nick Foles, Philadelphia Eagles quarterback and Super Bowl LII MVP, will assist Dysautonomia International in raising awareness and supporting critically-needed POTS research funding.
Tori has POTS and she and Nick participated in a panel discussion during this weekend’s conference. During the panel, entitled “Facing POTS: One Family’s Story of Devotion, Love &Service,” the Foles discussed a host of topics – how they met, Tori’s struggle to get her POTS diagnosed, medical appointments, getting engaged at Mayo Clinic (something only a dysautonomia patient would understand!), marriage, parenting, the hectic nature of an NFL life, their deep Christian faith and the challenges that dysautonomia patients confront each day.
The panel discussion was recorded and will be posted on the Dysautonomia International’s Autonomic Disorders Video Library (link) on Tuesday, June 26th. That’s the same day Nick’s new book, Believe It: My Journey of Success, Failure and Overcoming the Odds, will be released.
Nick told the audience that Dysautonomia International is among the charitable organizations that will receive profits from the book. Others will include local churches and Christian organizations. Nick and Tori have also personally donated to Dysautonomia International.
“We’re blessed that we have this chance to help raise awareness about POTS and dysautonomia and to contribute to very badly-needed research,” said Foles. “We want to support places and causes we are a part of, and where our hearts lead us. It’s important to us that we touch as many lives as possible.”
The Foles contribution from Believe It will go to Dysautonomia International’s POTS Research Fund (www.CurePOTS.org). Dysautonomia International created the POTS Research Fund in December 2013 to provide a dedicated stream of funding for POTS research. To date, the organization has issued $950,000 in POTS research grants. Their personal contribution will go towards research, physician education, public awareness and patient empowerment programs.
In Believe It, co-authored by Joshua Cooley and published by Tyndale Momentum, Nick writes candidly about Tori’s struggle with POTS. Stay tuned to the Dysautonomia Dispatch for an excerpt from Believe It on June 26th!
Author Maya Dusenbery spent the last few years researching the state of women’s health care for her new book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Maya interviewed patients, doctors, researchers and non-profit leaders to carefully document the female patient experience, including Dysautonomia International Co-Founder and President, Lauren Stiles. The book provides the first comprehensive look at how sexism in medicine harms women in our current era.
Maya reviews the history of several female predominant medical conditions, including POTS. She traces its roots from its initial description as DaCosta’s syndrome or Soldier’s Heart, considered by most doctors at the time to be an organic condition in male soldiers, to later descriptions attributing these symptoms to psychogenic origins once it was recognized that it was much more common in women, to the modern understanding of POTS and current research identifying an autoimmune mechanism in many POTS patients.
The text below is an excerpt from the book.
The organization [Dysautonomia International] is also helping push forward research on the condition. Way back in the early nineties, when Mayo Clinic researchers defined the syndrome, they suggested it might be immune related since many patients developed it after an infection. There’s other circumstantial evidence that hints at a possible autoimmune basis: the fact that it’s more common among women, that it runs in families, and that patients often develop other autoimmune diseases. (Though, like other unexplained conditions, “POTS likely has many different mechanisms, from inherited genetic traits, to immunological abnormailities, to structural neuropathies,” Stiles says.) The autoimmune hypothesis remained unexplored for decades, largely because the condition receives little funding. “Assuming POTS impacts the more conservative estimate of 1 million patients, it’s getting 1 million dollars a year at NIH; MS impacts 400,000 patients and gets over 100 million dollars a year,” Stiles says.
In the last few years, though, multiple research teams have come out with small studies showing that many POTS patients have autoantibodies to the adrenergic and muscarinic receptors, which are critical parts of the autonomic nervous system. Dysautonomia International decided to help speed along the scientific process by raising money to fund larger follow-up studies and literally bringing researchers to the patients. “We went to them and said, ‘we have this annual conference in DC every year; do you want to come to the conference and collect serum from a hundred patients?” At the last few conferences, several research teams took them up on the offer. In 2018, Dysautonomia International will distribute at least $300,000 in research grants, almost a third of the sum that the NIH, the largest public funder of scientific research in the world, can muster for research on the condition.
Of course, even before a formal advocacy organization like Dysautonomia International was formed, informal online patient communities had radically changed the POTS experience. When a prominent neurologist finally confirmed Stiles’s diagnosis, he warned that she would likely never meet another patient with it or find a doctor who knew how to treat it. Instead, to her relief, by the end of the day, she’d found an online support group with 3,000 members ready to share their advice and doctor recommendations. In fact, she credits online patient communities for everything: “I diagnosed myself through the Internet, I found other patients I needed for support through the Internet. And so, so often we meet patients who were diagnosed first by their friend – their girlfriend from dance class or whatever – and then found a doctor because of a recommendation they got from an online support group. Thank God for the Internet.”
Thank God, indeed. But this is not how it should be. We deserve better than a medical system in which an extremely debilitating and common condition remains so unknown more than two decades after it was first described (or 150 years, depending on when you start counting) that patients have to do everything themselves – from diagnosing each other to teaching their own doctors about it to funding the scientific research that’s so desperately needed to explain it and cure it.
We are pleased to announce that Dysautonomia International’s July 2017 Lobby Day and October 2017 Congressional Briefing resulted in a major Congressional victory for POTS research funding!
For the first time, Congress has directed the National Institutes of Health to “stimulate the field” of POTS research by adopting the following language in the Appropriations Committee Bill Report attached to the FY 2018 Omnibus Bill, which became law on March 23, 2018:
Postural Orthostatic Tachycardia Syndrome [POTS]. — With an estimated 1,000,000 to 3,000,000 Americans suffering from POTS, a neurological disorder that affects mostly adolescent and adult women, there are no effective treatments to address this often misdiagnosed and debilitating condition. The level of disability resulting from POTS can be similar to that occurring in multiple sclerosis and congestive heart failure, but little research funding has been dedicated to date to improving understanding of POTS. Due to the lack of effective treatments, many patients are unable to attend school or work, resulting in significant impacts to the U.S. economy. The World Health Organization recently approved the first unique ICD code for POTS, which when implemented, will hopefully enable more precise epidemiological research on the disease. The Committee expects NHLBI and NINDS to work with stakeholders to stimulate the field and develop strategies that will increase our understanding of POTS and lead to effective treatments.
Dysautonomia International requested the inclusion of this language in the Report, and it was included with the support of Senator Patty Murray (D-WA) and Senator Roy Blunt (R-MO). We would like to thank Senators Murray and Blunt for their bi-partisan leadership on this issue, as well as Representative Brian Fitzpatrick (R-PA) and Seth Moulton (D-MA) for their co-sponsorship of the October 2017 Congressional Briefing.
We would also like to thank all of you who participated in the grassroots effort to meet with your Congressional offices during Dysautonomia Lobby and those of you who persuaded your Congressional offices to attend the October briefing.
Dysautonomia International Board members recently met with NIH leaders to discuss the current state of POTS research and the overall dysautonomia patient community’s needs. We have additional meetings planned this spring to discuss how NIH can “stimulate the field” of POTS research, and “develop strategies that will increase our understanding of POTS and lead to effective treatments.” Our goals is to obtain increased POTS and autonomic disorders research funding from the NIH, which is very much needed.
Sign up for our email list to find out about future advocacy campaigns. When we speak up together, we can #MakeNoiseForTurquoise! Please consider supporting our advocacy initiatives with a donation to Dysautonomia International today!
Dysautonomia International is looking forward to a fantastic 2018, and to kick things off we’re welcoming three new board members and our second employee!
Dr. Brent Goodman, Director of the Autonomic Lab at Mayo Clinic’s Scottsdale, Arizona campus, has joined our esteemed Medical Advisory Board. Dr. Goodman and our other Medical Advisory Board members perform an important role in the organization, serving as our outreach ambassadors to professional societies, medical schools and medical journals, working with Dysautonomia International to educate fellow medical professionals about autonomic disorders. Our Medical Advisory Board also reviews all medical content and helps us select the best research to fund through our competitive peer-reviewed POTS Research Fund grants process.
Christy Jagdfeld of Wisconsin has joined our Board of Directors, and will serve as Board Treasurer. Christy has been involved with Dysautonomia International for several years, as an active volunteer hosting awareness and education events in Wisconsin, and more recently as co-leader of our Wisconsin Support Group. She brings accounting and business management skills to the Board that will help us continue to grow as an organization. Christy and her daughter, who has POTS, are very passionate about raising awareness and supporting people coping with dysautonomia.
Jacqueline Rutter Gully of Massachusetts has also joined our Board of Directors, and will serve as Board Secretary. Jackie brings her expertise in communications to the board, and the whole Rutter-Gully family is involved with Dysautonomia International. Jackie’s daughter Hanna serves on our Patient Advisory Board and leads Team Hanna G and Me, one of our most active teams that participates in the Boston POTS Walk. Jackie’s husband Andrew and other children, Jocelyn and Dylan, lend their skills, along with our talented videographer, Evan Carter, who is dating Jackie’s daughter.
As we welcome new board members, we also want to express our sincere gratitude to departing board members Ellen Kessler and Clover Yordanova, who were both members of the original founding Board of Directors of Dysautonomia International. Ellen served as our volunteer Treasurer and Chief Financial Officer, and Clover served as our Secretary, since our launch in 2012. Both ladies plan to remain involved in the organization as volunteers.
We held a cocktail party recognizing Ellen’s five years of service to the board in Washington, DC this fall, presenting her with a Leadership Award for the amazing time commitment she put into managing our organization’s finances, offering pro bono accounting services for the past five years. Dr. Kamal Chemali, Ellen Kessler, Lauren Stiles, Kirsten Slowey and Dr. Hasan Abdallah during the awards reception recognizing Ellen’s service to Dysautonomia International.
To help us meet our growing accounting and business management needs, we recently hired an experienced professional to serve as our Office Manager, Elena Fries. We’re delighted to have Elena join our team.
While we’re mentioning staff, we should give a special mention to Kirsten Slowey, our Director of Events & Medical Affairs. Kirsten has been the mastermind behind our amazing annual conferences for the past few years, and she joined Dysautonomia International full-time in 2017. Kirsten also coordinates with our state and province based support groups, works with volunteers looking to host fundraisers or educational events, and helps plan Dysautonomia Awareness Month events around the world.
Kirsten and Elena are our only two employees. Amazingly, most of what we have been able to accomplish as an organization has been carried out by volunteers, young and old alike. Our Board of Directors, Patient Advisory Board, Medical Advisory Board, and State Support Group Leaders all serve as volunteers, and many individuals volunteer in other capacities.
Thank you to everyone who made 2017 our most successful year yet. We have an ambitious agenda for 2018, which includes funding more POTS research than ever before, hosting physician and patient education courses in new cities, taking our annual conference on the road to Nashville (June 22-24 weekend – save the date!), expanding our free monthly webinars, revamping our website, updating our newly diagnosed patient brochure, continuing to grow our regional support groups, and so much more! Consider making a donation today to help us reach our goals in 2018.
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Yesterday, Solange Knowles penned a heartfelt note on Instagram, discussing how she was forced to cancel an upcoming New Year’s Eve performance due to an ongoing health struggle, revealing to her 3.4 million followers that she has been battling an autonomic disorder. The Grammy award winning singer and songwriter wrote, “The past five months I have been quietly treating, and working through an Autonomic Disorder. It been a journey that hasn’t been easy on me (…) Sometimes I feel cool, and other times not so cool at all.” She continues, “It’s a complicated [diagnosis], and I’m still learning so much myself.”
Some of the comments expressed disappointment about the show cancellation and well wishes for Solange’s health, but many expressed curiosity about autonomic disorders. I felt like a kid in a candy store, as this was my opportunity to shed some light on autonomic disorders and lead people to the Dysautonomia International website for education and awareness, which has helped me so much on my journey.
I have been battling postural orthostatic tachycardia syndrome (POTS), a common autonomic disorder that impacts an estimated 1-3 million Americans, mostly young woman. Like Solange, my diagnosis has been “complicated,” as it took two years to receive a diagnosis. I was the one of the fortunate ones, as the average POTS patient takes over four years to get diagnosed and sees seven doctors prior to being diagnosed with POTS. Due to a lack of awareness amongst medical professionals, about 75% of POTS patients are told some version of “it’s all in your head” prior to finding out they have POTS. Doctors simply aren’t taught much about autonomic disorders in medical school. I was told for years that I was crazy, anxious, and that nothing was wrong with me. In reality, I have a serious autonomic nervous system disorder that affects my ability to regulate my temperature, heart rate, blood pressure, breathing and digestive system. Nine years later I am still attempting to find the best treatment to manage my symptoms, and as of right now, there is no cure.
I’ve always had a great deal of admiration for Solange, but after she disclosed her battle with an autonomic disorder, I am proud of her. Solange is a strong and independent African-American woman who emphasizes empowerment, and this announcement epitomizes her message. I am a self-proclaimed feminist and proud HBCU alum, so it brings me joy to see a black woman become the most high-profile individual to announce that she’s battling an autonomic disorder (although I wish no one had to go through this). As Solange uses art to express herself and cope with life’s difficult moments, I have used writing to cope and show the world you can still reach for your goals despite chronic illness. I understand how difficult and empowering it is to be able to tell the world that you have been quietly dealing with illness.
However, since I started this journey, I have not found many people in support groups, research studies or media coverage about autonomic disorders that look like me, a woman of color. There is something powerful about a connecting with another black woman who knows what I’m going through. There is strength, power of ally-ship, pride, and community associated with being a woman of color. Sometimes it is isolating not seeing the black community or other people of color well-represented in the chronic illness world. I would love to tell you this is because people of color don’t suffer from chronic illness that often, but unfortunately, that’s not the case.
Research data shows that POTS, one of the most common autonomic disorders, is much more common in the Caucasian population (about 94%-96%), but it isn’t clear how much these percentages are influenced by major gaps in access to quality health care for people of color. POTS is a condition that is nearly impossible to receive a diagnosis for, regardless of race, due to lack of physician and public awareness. It is likely that people of color are having an even more difficult time getting diagnosed. Once a person of color is able to access health care, many research studies on a wide variety of medical problems show that racial discrimination in health care is a serious and far-reaching problem, with doctors often dismissing symptoms, refusing to offer treatments, forgoing tests and missing diagnoses more often in people of color than in Caucasians. This discrimination contributes to the inequalities that have left people of color with unbelievable health disparities, and worse overall health outcomes in the United States. Simply by speaking up about her diagnosis, Solange has raised a lot of awareness about autonomic disorders, which benefits all patients, especially women of color like me.
As I scrolled through the Instagram comments on her page, one really stood out to me – “this sounds like a rich people disease.” That could not be further from the truth. This last year has been a testimony to my strength, determination, perseverance and faith. My health significantly declined, treatments failed, I had to give up a job I loved, and I lost insurance multiple times. I ended up broke, begging for money from friends and family, and homeless. Now, at 27 years old, I spend my days fighting with insurance companies, city representatives, and doctors trying to get the resources I need to access basic medical care and keep a roof over my head. Many people with autonomic disorders face tremendous medical expenses they can’t afford, and about 25% of people with POTS are so disabled they can’t work. Autonomic disorders are not glamorous.
One thing about chronic illness is that it is humbling. No matter how famous you are or how much money you have, once you’re diagnosed with a chronic illness, we are all one in the same. Although Solange may have access to more resources than the average person battling an autonomic disorder, sympathy and empathy were the first feelings that I had when I read her announcement. She still must cope with complicated symptoms, feeling as though her body has betrayed her, making decisions about her career and its influence on her health, finding the right health care team that will listen to her, and dealing with the trial and error it takes to find the right treatments for an autonomic disorder. She is human, dealing with a new diagnosis, hoping to receive love and support just like the rest of us. Coping with an autonomic disorder is hard to do from the privacy of your own home, and likely much harder in the glare of the media spotlight.
It is my hope that the outpouring of support Solange has received gives her the motivation to continue on her path to improved health, and maybe gives other high-profile individuals the encouragement they need to speak up about their autonomic disorder diagnosis – we know they are out there because autonomic disorders are so common. I wish Solange nothing but healing vibes, and can’t wait to see her return to the stage stronger than ever.
Today’s guest post is from Natasha N. Graves. Natasha is a photographer, writer, blogger (www.myhiddentruths.com) and health educator. Holding a masters in public health, she uses her skills to teach others about the health conditions that she battles and documents her journey with chronic illness. Natasha has been diagnosed with POTS secondary to Sjogren’s Syndrome.
Looking for holiday gift ideas? Here are a few things that will bring a smile to your favorite dysautonomia warrior’s face this holiday season.
Remember, when you shop for any item on Amazon through our Amazon link, 6% of your purchase will be donated to Dysautonomia International!
1. FighterWear
Nuture your loved one’s fighting spirit as they fight dysautonomia everyday! FighterWear was designed by fellow dysautonomia warrior Morgan McCastor, who donates the profits to Dysautonomia International. The hoodies are super soft and comfy. Turquoise is the color of dysautonomia awareness.
2. Vitassium
SaltStick Vitassium is an oral salt pill with added potassium that is designed not to upset your tummy like many salt pills do. It’s a great way for dysautonomia patients to get extra salt in their diet, which is usually recommended by their doctors. SaltStick donates 10% of all sales of Vitassium to Dysautonomia International. Buy it through our Amazon link and an extra 6% will go to Dysautonomia International.
3. PURE
NormaLyte PURE is a flavorless electrolyte powder you dissolve in water. People with dysautonomia are often advised by their doctors to drink 2-3 liters of hydrating fluids per day, but plain water isn’t as helpful as water that has sodium and other electrolytes in it. PURE is formulated to provide maximum hydration and was developed with the input of over 1000 dysautonomia patients. NormaLyte donates 10% of all sales of PURE to Dysautonomia International. Buy it through our Amazon linkand an extra 6% will go to Dysautonomia International.
4. POTS: Riding the Wave of Dysautonomia
This book was written by one of our founding board members, Jodi Epstein Rhum. After raising kids with POTS and EDS, Jodi took everything she had learned, and reach out to other experts like Dr. Svetlana Blitshteyn, and put it into an easy to understand book for patients and family members. Jodi founded the POTS group on Facebook and is one of the founding board member of Dysautonomia International. She donates 10% of book sales to support our research and education programs. Buy it through our Amazon link and an extra 6% will go to Dysautonomia International.
5. Food That Cares: A Restorative Approach to Health, Living with POTS, Dysautonomia and Chronic Illness
This beautiful cookbook filled with tasty, easy to prepare, nutritious meals will get your taste buds excited. Author Wendy Baruchowitz went back to school to become a Integrative Nutritionist after she was diagnosed with celiac disease and POTS. Wendy volunteers on Dysautonomia International’s Patient Advisory Board and donates a portion of book sales to the organization.
6. “I’m so tachy” gear
Humor is a great way to cope with the difficulties of chronic illness, and our “I’m so tachy” shirts are sure to make the POTS patient in your life laugh. People with POTS have excessive tachycardia (a very fast heart rate) when they stand up. “I’m so tachy” gear is a great conversation starter and can help raise awareness as everyone will want to know, why are you tachy? A portion of the sales benefits Dysautonomia International, and the shirts are available through our Cafepress store.
7. Compression gear
Doctors often recommend 30-40mmHg full-length medical compression stockings to help dysautonomia patients avoid blood pooling and get more blood flowing back up to the heart and brain. While full-length stockings work best, some patients prefer thigh high or sock length compression gear. They come in nude, black, many colors, and prints too! Compression socks aren’t as effective at preventing blood pooling, but may be fun to wear on days you’re dysautonomia warrior is chillin’ out on the couch. Abdominal compression can help too. Abdominal binders are available, but women often prefer Spanx and similar compression undergarments. Compressing the lower abdominal area is key, so don’t get something that only cinches the smallest part of the waist.
8. Home/Yard Cleaning Services
Some people who have dysautonomia can have a really hard time doing regular cleaning around their home or yard maintenance. This is extra challenging for adult patients who have homes/families to care for, especially single adults. Offer to hire a cleaning or yard maintenance service if you can afford it (“fall clean up” or “spring cleaning” are good times to do this), or give your loved one with dysautonomia a handmade “IOU” gift card that it redeemable for one day of yard cleaning or house cleaning done by you when they need it. Raking leaves, mowing the lawn, laundry, prepping dinner – believe us, they will appreciate it!
9. Cooling devices
People with dysautonomia can feel much worse in the summer heat, because some of us don’t regulate our temperature properly, or we can’t sweat. Heat can also dilate our blood vessels more than normal, which can drop blood pressure. Cooling vests, neck wraps, wrist wraps, and personal spritzer fans may make us more comfortable in the heat of summer.
10. Glass Water Bottle Infuser
Dysautonomia experts jokingly refer to “the water bottle sign” as a sign that someone has dysautonomia. People with dysautonomia usually are advised by doctors to drink 2-3L of hydrating fluids per day, so it’s common for us to always have a water bottle with us. It can get boring drinking plain water, so some patients like to infuse their water with melon, berries, mint, cucumber, pomegranate, citrus, herbal teas, and other flavor infusions. Look for glass bottles if you want a bottle that can hold hot and cold beverages, and something with a slip proof grip case, like this one. There are many sizes and options available.
Some dysautonomia patients use NormaLyteas a way to supplement their salt and fluid intake. NormaLyte comes in several flavors and a plain flavor developed with the input of Dysautonomia International and over 1000 dysautonomia patients, called PURE. It’s an electrolyte powder you can add to water. Some people like to add a splash of their favorite flavor juice, like OJ or cranberry juice to give it a little flavor. NormaLyte generously donates 10% of sales from PURE to Dysautonomia International to support our research, physician education, public awareness and patient empowerment programs.
Some insurance companies may reimburse you for the cost of NormaLyte with a prescription from your doctor because it is considered a Medical Food Product approved by the FDA. This Letter of Medical Necessity Templatemay be helpful in persuading your insurance company to pay for it. Call your insurance company to see if Medical Food Products are covered by your plan when you have a prescription and a letter of medical necessity from your doctor. Then ask your doctor to fill it out. The doctor can change the letter as needed for your specific situation.
Dysautonomia International hosted a Congressional Briefing on POTS on October 19, 2017. Speakers included three of our board members: Lauren Stiles, Dysautonomia International President, Dr. Glen Cook from Naval Medical Center Portsmouth, and Dr. Jeffrey Boris from Children Hospital of Philadelphia.
Thanks to a grassroots effort that involved many Dysautonomia International volunteers, 85 Congressional staffers participated in the briefing, as well as senior staffers from the National Institutes of Health and Department of Defense. We were told this is a wonderful turnout for a first-time briefing, especially for a medical condition that most people haven’t heard of. A list of Congressional offices that participated is included below.
If any of your House or Senate members are listed, please send them an email, call or tweet thanking their staff for participating in the October 19th POTS briefing, and let them know why this is important to your family. You can find their phone numbers hereand their Twitter handles here. If you are emailing or tweeting, consider sending them a link to learn more, either our POTS page (www.dysautonomiainternational.org/POTS) or our “What is POTS?” video (https://vimeo.com/187404694).
Lauren gave the patient perspective and reviewed the unfortunate lack of NIH funding that is spent on POTS research, Dr. Cook reviewed the basics of POTS, and Dr. Boris provided a brief overview of quality of life, epidemiology and co-morbidity data on POTS. Our goal was not to teach them everything about POTS, but rather to tell them it exists, it’s serious, there is a huge patient community dealing with this, and it requires more federal resources.
The feedback from the audience after the briefing was great. Three Congressional staffers let us know that they had POTS (three cheers for POTSies getting awesome jobs on Capitol Hill!), and two other staffers let us know they had children with POTS. Another staffer told us he was headed to medical school and would be sure to be on the lookout for POTS patients. Even those who had no personal connection to POTS were very supportive of our efforts and they offered to meet with us to follow up on specific action items.
Special thanks to our bi-partisan Congressional Briefing Co-Sponsors!
Senator Roy Blunt (R-MO)
Senator Patty Murray (D-WA)
Representative Brian Fitzpatrick (R-PA)
Representative Seth Moulton (D-MA)
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Congressional Offices In Attendance By State Alabama
Office of Representative Bradley Byrne
Arizona
Office of Representative Martha McSally
Office of Representative David Schneikert
California Office of Senator Dianne Feinstein Office of Representative Juan Vargas Office of Representative David Valadao Office of Representative Raul Ruiz Office of Representative Susan Davis
Office of Representative Pete Aguilar
Office of Representative Ted Lieu
Colorado
Office of Senator Cory Gardner
Office of Senator Michael Bennet
Connecticut
Office of Senator Blumenthal
Delaware Office of Senator Christopher Coons
Office of Representative Lisa Blunt-Rochester
Florida Office of Senator Bill Nelson
Office of Representative Kathy Castor
Office of Representative Matt Gaetz
Office of Representative Ron Dejantis
Georgia
Office of Senator David Purdue
Illinois
Office of Senator Dick Durbin
Indiana
Office of Senator Joe Donnelly
Kansas Office of Senator Jerry Moran
Office of Representative Ron Estes
Office of Representative Lynn Jenkins
Maryland Office of Senator Elizabeth Warren
Office of Senator Chris VanHolland Office of Representative John Delaney
Office of Representative Andy Harris
Massachusetts Office of Senator Ed Markey
Office of Representative Seth Moulton
Missouri Office of Senator Roy Blunt
Nebraska
Office of Senator Deb Fischer Office of Representative Don Bacon
New Hampshire Office of Senator Jeanne Shaheen
New Jersey
Office of Senator Bob Menendez
New York
Office of Senator Chuck Schumer Office of Representative Paul Tonko
Office of Representative Grace Meng
Office of Representative Lee Zeldin
Pennsylvania Office of Senator Bob Casey, Jr.
Office of Representative Brian Fitzpatrick
Puerto Rico
Office of Representative Jennifer Gonzales-Colon
South Dakota
Office of Senator John Thune
Texas
Office of Representative Kevin Brady
Office of Representative Ted Poe
Virginia
Office of Senator Tim Kaine
Washington
Office of Senator Patty Murray
Office of Senator Maria Cantwell
I can recall vividly every odd sensation, “episode,” and doctor visit from my journey to being diagnosed with POTS (postural orthostatic tachycardia syndrome). Prior to being accurately diagnosed, I completed over a dozen diagnostic tests – including event monitors, Holter monitors, echocardiograms, blood draws, EKG’s, thermoregulatory sweat testing, tilt-table testing, and autonomic nerve reflex screening. I visited with four cardiologists, three electrophysiologists, three primary physicians, a neurologist, and several emergency room physicians. Throughout my testing, I was offered diagnoses ranging from heart blocks, to panic disorder, to lung disease, and then some. I was given prescriptions for more drugs than I can count (of which I took zero), and offered interventions such as ablation, pacemakers, consumption of two gallons of water per day, etc. During this ordeal, I became categorized as a “doctor shopper” because I continuously turned down medical advice with the true belief that I was being misdiagnosed.
My journey to being diagnosed with POTS has been one of the most frustrating, exhausting, saddening experiences of my life. Naturally, it is hard to have faith in a system which offers you so many differing opinions and passes out prescriptions for some serious medications as if they were candy. Many days I would simply cry, wondering if anyone would ever be able to help me and hoping that I would someday feel like myself again.
After undergoing extensive testing at a medical facility with people who specialize in POTS, my diagnosis was confirmed. Although there is no definitive cure for POTS, simply having a firm diagnosis with accompanying ways to improve my quality of life brought me so much joy. And so, it has become my mission to spread hope for those struggling with POTS – because together, and with the help of our medical teams – we can find ways to enjoy the small victories of each day.
First and foremost, I want to tell my POTS brothers and sisters that we need to give ourselves a break. We may not be able to do all of the things we used to do before – but we can still do something. Six years ago, I completed my second marathon, was taking 30-day yoga challenges in 104-degree heat, and making my way into the world of CrossFit. Today, I throw a “me-party” when I can walk up two flights of stairs without feeling like my heart is going to jump out of my chest. I cannot do the things I was physically capable of before without my heart rate hovering around 200, but I can go for walks. I can use the recumbent bicycle, I can do some weight-lifting exercises, and I can experiment with the rowing machine. More extreme forms of exercise may be a thing of the past, at least for now, but I feel empowered to explore new ways of working out, and feel a greater sense of pride and content with my body when it is able to perform these things for me.
I am also grateful for all of the natural therapies that having POTS has led me to discover. Naturally, it is normal to feel a sense of anxiety when you stand up to complete every day tasks (brushing your teeth, for example) and your heart rate is 140. This sense of anxiety has brought me to discover things like essential oils, guided imagery, meditation, and the simple pleasure of sitting in a bath-tub loaded with magnesium salts. Discovering ways to relax when I am having bad days with POTS has led me to implement the same stress-relieving techniques in other areas of my life, which has proven to be very beneficial.
Additionally, life with POTS has truly opened my heart and made me a profoundly more empathetic person. While I cannot say I understand what it is like to live with other chronic ailments, I can say that I understand what it is like to accommodate an unplanned condition in day-to-day life. My desire to comfort and provide support for others is bursting at the seams. As a nurse, I find myself truly and deeply invested in the balance of physical, mental, and emotional health of my patients on a level I likely could not have reached without my journey with POTS. To share in the uncertainty, fear, and anxiety of others is a profound honor and one that has inspired me to count all the blessings I still have every day.
Perhaps most significantly, my journey with POTS has made me appreciate all of my friends and family in a whole new light. Though I am sure that all of the people I love have faced their own frustrations throughout my journey, they have always been insanely supportive. My husband has been at every doctor visit that I asked him to attend, filled my water bottle for me on countless occasions, comforted me in my most anxious moments, and helped me complete tasks on days when I am really struggling. Sometimes it is easy to make it all about myself and forget about all of the support that my loved ones have given me – but when I really stop and reflect, I realize how lucky I am to have people to share in my weaknesses and triumphs with me. As the Swedish proverb says – “shared joy is a double joy; shared sorrow is half a sorrow”.
There are many flavors of POTS and just as many different treatment approaches. What we do have in common though, is the ability to wake up every morning and choose how we are going to face the day. There will be days that are hard – let us accept them and listen to our bodies. There are days that will be good – let us embrace them and give thanks for all our bodies accomplish for us. But, let us always realize that we are strong, we are capable, and we will never quit. For every one thing that we are struggling to do, let us think of three things that can do – and be grateful for these things. Let us feel gratitude for all of the unique experiences that POTS has brought into our lives that we may not have experienced otherwise.
We may not always be able to control our bodies physically, but we can always control our reactions to our setbacks and how we let them affect our lives. In exercising our unending emotional and mental strength, together, we will ALWAYS be greater than POTS.
Guest author Maggie Sosinski has been battling POTS since 2014. She is passionate about spreading positivity and supporting those whose lives are affected by POTS and other forms of dysautonomia. She recently re-located to Minnesota where she lives with her husband and works as a nurse.
Dysautonomia International asked patients to share what lifestyle adaptations they use to help manage their dysautonomia symptoms as part of our #TuesdayTips project. Look out for other #TuesdayTips posts on social media and your tips may be featured on our blog!
Breaking my meals up into smaller meals. If I’m going somewhere that requires a lot of walking or somewhere in a warm climate, I use a wheelchair or scooter The biggest adaptation is always planning when we go places. -Lydia M.
As a nurse, I take electrolyte tablets, wear complete compression hose, and drink NUUN tablets in my water! I salt absolutely everything and take frequent sitting breaks (even if I’m putting in an IV!). I always wear layers so when I have hot spells I can take them off. -Karena M.
Mornings are tough for me, so for mornings where I have to go to work I “automate my mornings” as much as possible, which means I make as many decisions the night before and get things ready so I don’t have to worry about them when I wake up. For example, I set my alarm an hour before I have to get up to take my medications (then go back to sleep) so my blood pressure and heart rate have time to stabilize I also have my medications in a pill container for the day ready to go, and I set out my clothes, pack lunch, and set out anything I need to take with me for the day. -Megan H.
Salt, salt, salt! -Brooklynn B.
Having a pillow and my walker to put my legs up on helps. Plus, the walker allows me to sit anywhere. I couldn’t survive without it. Mine is a walker/wheelchair, and the seat faces forwards and has a footrest so I can be pushed in it and also use it as a walker. -Sarah S.
Before getting out of bed, I drink water and “pump” my legs. Using compression, taking electrolyte tablets, and drinking water – no caffeinated drinks – helps. I also have regular sleep and wake patterns, and my diet is about 80% Paleo. I also read encouraging scripture each day! -Brandie D.
“We’re blessed that we have this chance to help raise awareness about POTS and dysautonomia and to contribute to very badly-needed research,” said Foles. “We want to support places and causes we are a part of, and where our hearts lead us. It’s important to us that we touch as many lives as possible.”
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