Dysautonomia International is pleased to announce the election of three new members to our Board of Directors. The newly elected board members are Natasha Graves, MPH, MBA, CHES, Amy Kohut, JD, and Shannon Koplitz.

We are thrilled to welcome these talented individuals. Their long time volunteerism and commitment to Dysautonomia International’s mission, providing awareness for all forms of dysautonomia, and assisting the patient and parent community, is commendable. Their unique backgrounds and diversity in experience are an asset to our organization. 

Dysautonomia International also welcomes back returning members of the Board of Directors, Christy Jagdfeld, CPA, Jackie Rutter Gully, and Lauren Stiles, JD.

“We are so excited to have Natasha, Amy, and Shannon join the Board. Their unique skills will help us better serve our patient community and expand the resources we can offer. We’ll also be adding new members to our Patient & Caregiver Advisory Board and Medical Advisory Board soon, to keep up with the continued growth of Dysautonomia International,” noted Board President and co-founder, Lauren Stiles.

As we welcome our new Board members, we want to extend our heartfelt gratitude to founding Board member Jodi Parker for her eight years of service to Dysautonomia International’s Board of Directors. Jodi organized our very first fundraiser, a pumpkin festival in the Chicago area called “Carving Out A Cure.” She founded the large POTS group on Facebook, which is where Dysautonomia International’s founding Board of Directors first met each other. She generously donates a portion of the proceeds from a book she wrote before Dysautonomia International existed, POTS – Together We Stand: Riding the Waves of Dysautonomia. Jodi decided to pass the torch to new Board members, but she will continue to volunteer with the organization in other ways. Jodi explains, “It was a pleasure and an honor to be a part of such an incredible organization that stands at the forefront of research, advocacy, awareness and support for the dysautonomia community. I want to thank our entire team for their tireless efforts to empower and enrich the lives of individuals living with dysautonomia around the globe. I look forward to the continued growth of Dysautonomia International, and remain committed to helping this wonderful charity in any way I can.“

Read more about our new members of the Board of Directors.

Are you interested in volunteering as a Board member, Advisory Board member, Support Group leader, or in another capacity? We’d love to hear from you! Please contact Kirsten Slowey, Director of Events & Community Affairs, at kslowey@dysautonomiainternational.org.

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Dysautonomia International is putting the volunteer spotlight on Jackie Cinnamon this month. Jackie has been volunteering for Dysautonomia International for the last five years. “I wanted to start volunteering for Dysautonomia International because I thought if I could help even one person avoid going through what I went through, then it would be time well spent.”  Despite being seen by a variety of specialists at well respected medical institutions, Jackie experienced a diagnostic delay of four years for dysautonomia, and  six and a half years for a systemic autoimmune disease underlying her case of dysautonomia. Earlier identification and intervention could have made a big difference.

Jackie volunteers as a member of Dysautonomia International’s Patient Advisory Board. She recently spoke at Dysautonomia International’s 7th Annual Conference about being a parent and having POTS. When asking Jackie if she had a special moment while volunteering she says, “[c]onnecting with patients and their family members, or advocating on their behalf, never stops being special. It is an honor to be trusted with someone’s story and have the opportunity to connect them with information and resources that will help make them more effective self-advocates.” Jackie also helps moderate her Dysautonomia International state support group and is always so helpful and kind to others in the community.

“Don’t give up! When one approach fails, move on to the next one. When one doctor is out of ideas, consider consulting with another. Take mental health breaks as needed, then get back at it. My own experience over the past 12 years has been that information is power when it comes to living with poorly understood, under-recognized, health conditions. Learn how to identify reputable resources, then do everything you can to educate yourself and become a well-informed self-advocate. My favorite resources are PubMed, journal articles available through Dysautonomia International’s website, and Dysautonomia International’s Autonomic Disorders Video Library and YouTube where you can watch webinars and presentations from conferences.”

Thank you Jackie for everything you do!

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Over the past three months, as much of the world has lived in quarantine because of COVID-19, we have witnessed a disproportionate burden of illness and death among racial and ethnic minority groups. We have witnessed heinous acts of violence against individuals of color, and the destruction of American cities that further threatens and oppresses these communities. We have witnessed the tragic deaths of George Floyd, Breonna Taylor, Ahmaud Arbery and sadly, many others.

Stating that “Black Lives Matter” is not negating all other lives. It is acknowledging racism and systematic oppression against Black lives. It is a reminder to the world that Black Lives Matter and deserve to be treated equally. Because of the pandemic and other current events, Black people will have a disproportionate level of grief, trauma, and funerals.

As a Black woman, living in a Black neighborhood, living with POTS and other chronic illnesses, I have both seen and experienced the impacts of our world’s current events. I have had anger, fear, sadness along a rollercoaster of other emotions. I hurt because I am a Black woman. I hurt because of the trauma I have experienced in the past dealing with racism and discrimination. I hurt because of the racism I have personally experienced when dealing with the healthcare system. I hurt because I have two Black brothers, who I fear that one day will be seen as intimidating and may be injured (or worse) at the hands of racially motivated violence. I hurt because while standing outside in front of my house with the dog waiting for her to go to the bathroom, with every car that goes by I have to worry about cops arresting me or worse for being out after curfew, or one of the White vigilantes that have been terrorizing Black people in my city. I hurt because of the heartbreak of seeing my community being torn to pieces. This constant state of grief and anxiety isn’t good for anyone, but especially someone living with a chronic illness. There is evidence that racism is associated with physical and mental health consequences, so imagine adding the layer of preexisting chronic illness to that. This is what I face, along with many others in my community. 

Since I started my POTS journey over ten years ago, 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.  It is both frustrating and 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. 

As I have mentioned in my previous blog post, What Solange’s Announcement Means to Me, “[r]esearch 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.” Furthermore, many in the Black community don’t trust the systems we have to diagnose chronic illnesses after the long traumatic history that we have faced with the U.S. healthcare system, through examples such as the Tuskegee syphilis experiment, Henrietta Lacks, and eugenics. 

POTS is a condition with a long diagnostic delay, regardless of race, due to lack of physician and public awareness. It is likely that people of color have an even more difficult time getting diagnosed because of the healthcare system distrust and discrimination. As I had mentioned in my previous post, “[o]nce 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.” In terms of the autonomic nervous system, research shows that heart rate variability among African-American’s is impaired in geographical locations with higher levels of perceived racism, and reduced heart rate variability is harmful to your health.

Through personal experience, I can tell you that many Black people in the chronic illness community don’t speak out. We don’t join Facebook support groups as often because of the fear of our family and friend’s reactions, the stigma involved with having a chronic illness. We don’t join social media conversations because of fears of discrimination and the isolation associated with lack of representation.  

The overall racism and discrimination contributes to the inequalities that have left people of color with unbelievable health disparities, and worse overall health outcomes in the United States.  

Now, people are gathering in cities around the world to protest against the racism that hurts Black lives, that we have had enough of the mistreatment because of our skin color.  As a Black woman, I can’t help but feel a bit helpless because I can’t physically get out to attend the peaceful protests or help clean up the destruction. There is no evidence that POTS puts individuals at increased risk of serious complications from COVID-19. However, due to physical mobility issues, complications of my Sjogren’s syndrome (a cause of my autonomic dysfunction), and immunosuppressant medication I am on for my Sjogren’s syndrome, peaceful protesting is not possible.

These protests are happening in the midst of a pandemic, where the threat of COVID-19 is still very real. For the millions who are immunocompromised or live with severe chronic illnesses that put them at high risk, it is difficult to be around large crowds in general, but even more with the threat of COVID-19 in our communities.  

However, the behind the scenes work is just as important as in person protesting.  You can educate yourself on the issues. You can provide other levels of support by sharing factual media on social media, making phone calls, raising funds, supporting Black owned businesses, community planning, or just reaching out to the people of color in your lives. 

I am proud to be part of Dysautonomia International, an organization that has openly condemned the racism in our world. Furthermore, Dysautonomia International  is committed to everyone, worldwide, living with or affected by any form of dysautonomia.  

To my fellow Black people: We are listening. We hear you. Your lives matter. You are not alone.

Guest blogger Natasha Graves, MPH, MBA, CHES is the founder of VacayAbility, a website focused on accessible and inclusive tourism. Holding a Masters in Public Health, she uses her skills to teach others about the health conditions that she battles, blogging at myhiddentruths.com and volunteering on Dysautonomia International’s Patient Advisory Board.

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Meet Charlotte, who has been an active Dysautonomia International volunteer for  the past five years. When asked what inspired her to start volunteering for Dysautonomia International Charlotte says, “I was at a place in my life where I just kept getting sicker and I was desperate for a cure and more answers.  I thought, I can either get depressed and dwell on the fact that these things don’t exist or I can do my part to create them.  Once I saw all of the amazing things that Dysautonomia International had setup, it was a no brainer to get involved and collaborate with others to make a difference.”

With a background in theatre and education, Charlotte wanted to use her skills to create videos that other people in the community could share to educate others and to hear their story told.  Charlotte has made several videos used by Dysautonomia International and our community members to raise awareness. Each video tells a different part of the dysautonomia story.  “It has been amazing to hear the community react to the videos and to see the impact they have had on other people’s lives.”  Here are a few of Charlotte’s fantastic awareness videos, made with the help of Dysautonomia International’s North Carolina Support Group, a group she helped create:
Dukes Up for Dysautonomia Challenge
2018 Dysautonomia Awareness Month Video
Dysautonomia Health Hacks
The Faces of Dysautonomia

Charlotte also started Art with a Heart, an annual family-friendly fundraiser in North Carolina that grows each year. “Being sick can make you feel weak and less than, but when we combine our “spoons”, think creatively, and support each other, we can accomplish incredible things.  You matter to our community; so don’t be afraid to jump in and get involved!” 

Thank you Charlotte for everything you do for the dysautonomia community. We look forward to seeing what you create next to get people involved in fun, educational awareness projects!

If you’d like to get involved with Dysautonomia International, sign up for our email list to find out about upcoming events, host a birthday or other fundraiser on Facebook, or join a local support group to see what’s going on in your area.

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Meet Alex, a passionate Dysautonomia International volunteer and co-leader of the Dysautonomia International Australia Support Group.

Alex has a couple of motivations to be involved with Dysautonomia International. First and foremost are her kids. “I have twin 18 year-old daughters who have POTS. One first became unwell at 14, and the other at 15 years-old. They have two older brothers, one of whom is also currently being investigated for POTS. It makes sense for me to be informed, and also to be involved with an organization that drives research to improve diagnosis and treatment options.” says Alex. She also enjoys helping others who are going through what can be quite a confusing and even traumatic experience, to get accurately diagnosed and find proper treatment. Alex states “I’m really keen to be involved in raising awareness, providing advocacy, and in encouraging better education for health professionals.”

“Kate George is the other Australian group leader and I have loved collaborating with her to get this group off the ground! We have worked really well as a team and we’re enormously proud of the supportive and respectful community that has developed.” says Alex.

​Alex helped organize the first support group meet up in Australia, which took place in Sydney. “It was all new and I was apprehensive as I had no idea whether anyone would turn up. I was blown away by the small group of amazing people who came together, people with dysautonomia and some loved ones, all grateful for the opportunity to talk with others who ‘got it’. It was a very special gathering which showed me the real value of a supportive community.”

​Alex encourages others to “get involved, in whatever way you are able. This might be posting the occasional comment or question in an online support group, raising awareness with your friends and family, contributing to activities during Dysautonomia Awareness Month in October, supporting fundraising activities, or taking a more active role with Dysautonomia International. Every little bit counts – and together we can make a difference!”

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Dysautonomia International Medical Advisory Board member Dr. Satish Raj answered some common coronavirus questions we’re seeing on our support groups. Dr. Raj is a Professor of Cardiac Sciences at the University of Calgary.

I can’t reach my doctor and I think I may have coronavirus. What should I do?
Keep trying to reach your doctor, but in the meanwhile, you can use the CDC’s self-checker tool to see if your symptoms may be due to coronavirus. Make sure that you are “self-quarantining” if you have symptoms EVEN if you have not yet tested positive.

I have symptoms suggestive of coronavirus, but I can’t get tested. What should I do?
If you haven’t already done so, call your doctor to let them know you are feeling ill. Follow the advice from your doctor. If you cannot reach your doctor follow the CDC’s self-care guidelines. Most cases of COVID-19 can and should be managed at home, even in people with dysautonomia.

Since there are limited tests available at this time, government agencies and hospitals are limiting tests to those who need it most, like healthcare workers. Even if you test positive, the treatment is supportive. This means “riding through it” if able to do so at home, or being admitted to hospital if you need breathing support (hopefully not).

Is it normal to feel your heart racing faster than usual when someone with POTS has an infection?
Yes, it’s common for people with POTS to have a temporary worsening of their POTS symptoms, including more heart racing, when they have any infection. Even healthy people can develop some heart racing when they have an infection.

Should I go to the ER during the coronavirus pandemic if I am having a POTS flare?
It’s really important to avoid visiting the hospital at this time unless you are experiencing a life threatening situation. Hospitals are starting to become overwhelmed with COVID-19 patients who need emergency medical care to help them breathe. Visiting the hospital may expose you and anyone who joins you to COVID-19.

POTS flares can be very uncomfortable or distressing, but POTS is not life threatening. It is best to manage a POTS flare at home. Most POTS patients can ‘ride out’ a flare at home by resting in a quite space, laying down, putting their feet up on the wall or a few pillows, making sure they’re properly hydrated (some extra salt and fluids usually helps), and making sure they’ve taken their medications as prescribed. Eating frequent small low carb snacks or small meals several times a day can be helpful during a flare, rather than three larger meals. Slowing down your breathing or using relaxation apps may also help (POTS is not caused by stress, but being stressed about a flare can make the flare worse).

If you feel that you must go to the hospital, try to call first so that you can be instructed on what to do when you arrive, as many hospitals are trying to separate respiratory infection patients from other patients.

Stay up to date on the latest dysautonomia news, research and events by joining Dysautonomia International’s email list.

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Researchers around the world have started studying the use of plasma from people who have recovered from COVID-19 to treat those who are severely ill. Blood banks are also asking the public to donate blood, because many blood drives have been cancelled. Many of you have asked if it’s safe for people with POTS or neurocardiogenic syncope to donate blood or plasma, so we checked in with our Medical Advisory Board for their input.

What is convalescent plasma?
For over a century, doctors have used convalescent plasma to treat serious infections. Plasma is collected from a volunteer who has recently recovered from an infection. Their plasma usually contains a lot of antibodies generated by their immune system to fight off the infection. Their plasma is then infused into someone who is still sick and needs help fighting off the same infection.

Is convalescent plasma a proven treatment for COVID-19?
According to the US Food & Drug Administration (FDA), “[a]lthough promising, convalescent plasma has not yet been shown to be effective in COVID-19.” Since there are no known effective treatments, multiple options are being studied. There is some evidence suggesting that convalescent plasma may help some COVID-19 patients, especially those who are seriously ill. This is why the FDA recently announced an effort to study this treatment option. Other countries are also planning convalescent plasma studies.

Is it safe for people with POTS to donate plasma for COVID-19 research?
Prior research studies have found that a majority of people with POTS have a lower than normal volume of blood, also known as hypovolemia. However, not all POTS patients had this problem, and for some it is just slightly below normal volume.

The decision on whether or not a POTS patient should donate blood or plasma should be made on a case by case basis with input from your doctor. There is nothing about POTS that makes it inherently dangerous to donate blood or plasma. You may feel temporarily more lightheaded, which can also happen to healthy people when they donate blood or plasma.

If you do decide to donate blood or plasma, you should increase your oral fluids before and after your donation. Ask the donation center if you can receive 1L of normal saline after your donation. It may also help to be in a reclined position when donating blood or plasma. Most blood/plasma donation centers have recliner chairs available.

Is it safe for people with neurocardiogenic syncope (also known as vasovagal syncope) to donate plasma for COVID-19 research?
Yes, just like POTS, the decision on whether or not an NCS patient should donate blood or plasma should be made on a case by case basis with input from your doctor. There is nothing about NCS that makes it inherently dangerous to donate blood or plasma. You may feel temporarily more lightheaded, which can also happen to healthy people when they donate blood or plasma. For some individuals with NCS/VVS, the sight of blood or needles may trigger a syncopal event.

If you do decide to donate blood or plasma, you should increase your oral fluids before and after your donation. Ask the donation center if you can receive 1L of normal saline after your donation. It may also help to be in a reclined position when donating blood or plasma. Most blood/plasma donation centers have recliner chairs available.

Where can I find out how to donate convalescent plasma?
In the US, if you have recovered from confirmed COVID-19, visit https://ccpp19.org/donors to find out how to register to donate plasma. Canada is also putting together a study, which you can read about here. In other countries, we recommend contacting your local academic medical center, Red Cross, or local blood donation clinic to ask if they are collecting plasma from individuals who have recovered from COVID-19.

Where can I obtain plasma for someone who has severe COVID-19?
This research-based treatment is only being used in hospital settings for severely ill patients. If you are asking on behalf of a friend or loved one who is severely ill in the hospital with confirmed COVID-19, ask the hospital if they are part of a convalescent plasma research trial.

In the US, clinicians can register their hospital to be part of the national trial here.

If a US hospital is not part of an approved clinical trial, the FDA can also give physicians emergency authorization to use convalescent plasma in a single patient by telephone. This is called a Single Patient Emergency Investigational New Drug approval.

Several other countries, including Canada and the UK, are in the process of setting up COVID-19 convalescent plasma research studies. Ask the hospital if they are using convalescent plasma for their severe COVID-19 patients.

Where can I learn more about COVID-19 and how it impacts people with dysautonomia and related conditions?
Visit our Coronavirus Information Page: dysautonomiainternational.org/coronavirus.

Photo from MedPageToday’s story on COVID-19 plasma research.

Stay up to date on the latest dysautonomia news, research and events by joining Dysautonomia International’s email list.

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You have undoubtedly heard the news about the spread of coronavirus or COVID-19 and the advice that we should all be “social distancing.” We hope you’re doing well with the current health crisis, although we’re sure that dysautonomia patients are better than most at social distancing as many of us are experts at taking care of ourselves at home! Still, this is a very new time for all of us, so we wanted to provide you with some resources to help you make the most of your time at home.

Become a Dysautonomia Expert
If you watched even half of the 100+ videos on our Autonomic Disorders Video Library, you will have received more hours of medical education on autonomic disorders than most doctors receive throughout their entire career.

Read Books For Free
There are tons of ways to read books for free online without leaving your house. First, check out your local library’s website. Most public libraries partner with an app like Libby where you can check out books and audiobooks using your library card. Don’t have a library card? No problem. Check out Open Library, which allows you to check out books for free for a limited time. Not only do they have classic books like Shakespeare’s plays, but they also have newer collections like George R. R. Martin’s A Song of Ice and Fire. Manybooks and Project Gutenberg offer texts with expired copyrights, so they are free to share and download. Little ones may enjoy Storyline Online, where famous actors read beloved children’s books. This is 100% free and totally fun!

Take Online Courses
If you have time off of work or feel like sharpening your brain, there are many options for online learning. edX offers over 2,500 courses from 140+ different institutions. Coursera offers courses from over 190+ universities and companies. Khan Academy, which was originally created by Salam Khan as a way to help his cousins with their homework, can teach you anything from elementary school math to art history. Khan Academy utilizes videos, articles, and quizzes to help you master your topic.

Learn To Code
Computer programming is one of the most marketable skills on the job market right now, so why not use this time to develop it? Code Academy offers a quiz to help you figure out where to begin in your journey with coding, and lets you choose what you want to learn, whether it’s website learning or data analysis. Code Wars offers a huge selection of programming languages to learn, and gives you challenges to take on. For K-12 students, Code.org is designed specifically with kids in mind, and it’s supported by some of the biggest leaders in tech like Amazon, Facebook, and Google.

Learn A New Language
If writing a new programming language isn’t your thing, maybe speaking a new language is up your alley. It’s never been easier to start learning a new language with all of the free apps available. Duolingo is one of the most popular ways people are learning to speak new languages with a 4.7 rating and more than 704,000 ratings on the Apple App Store. Duolingo offers quick lessons you can take any time on your phone with visual and audio cues, quizzes, and lessons to help you start speaking a new language in no time. Babbel offers lessons are voiced by native speakers. Live Mocha is another option.

Learn to Cook
Social distancing means most, if not all, of our meals are made at home, so now is the perfect time to learn to cook, learn new recipes, or improve your cooking skills. YouTube is the first place you should turn as there are endless channels full of chefs who will not only teach you but entertain you. Try Bon Appetite, the popular channel created by Bon Appetit Magazine with great series like Baking School, Cook Like A Pro, or Gourmet Makes, where a chef will learn how to make your favorite treats and candies in the Bon Appetit test kitchen and teach you how to make them at home. There’s also BuzzFeed’s Tasty, full of recipes, meal ideas, and how to’s, plus more fun series like Making It Big, I Draw, You Cook, and the very helpful, Tasty 101. Binging With Babish will teach you how to make a dish inspired by a TV show or movie and has great commentary to go with it. If videos aren’t your thing, or you’re looking for something with a bit more intensive information, check out this cooking course from CookingLight full of articles about different techniques.

Exercise
Yes, yes, exercise. While we are all different, doctors typically advise people with dysautonomia to exercise 30 minutes a day, five days a week. Dysautonomia International offers dysautonomia-friendly exercise tips. Without access to the gym, exercise might get a little boring, so check out a 30 day free trial of the app Aaptiv, which offers guided workouts like yoga or outdoor running from professional trainers. Every workout comes with an energetic soundtrack to keep your energy up, and is offered in levels from beginner to advanced. If yoga is something that interests you, you can join the website DoYogaWithMe for free and get access to hundreds of yoga videos at different expertise levels and different lengths. Some are as short as 8 minutes, some span over an hour – you can find whatever is perfect for you.

Start Crafting
This one will require some supplies, but if you’re artistic, crafting is a great way to create something new while also relieving stress! The Spruce Crafts has tons of great tutorials on everything from crocheting, to knitting, to embroidery. You can learn how to add embroidered designs to your favorite t-shirt, how to make some custom beaded hairpins, and learn some new friendship bracelet patterns. If you’re a fan of paint and wine nights, you can still have them at home! Here’s a blog that outlines a suggested material list and even links to the YouTube they watched for their own at-home-paint party. Check out The Art Sherpa’s YouTube channel for dozens of painting tutorials. Artist at Heart Paint Party will also be going live every weekday this week at noon with a free art lesson!

Check Out Online Concerts
Most musicians are having to cancel their tours due to coronavirus, but some are turning to Twitter, Instagram, Youtube, and Facebook to still give their fans a show. Check out your favorite artists’ social channels to see if they’ve posted anything new. Visit StageIt where you’ll find concerts from thousands of different artists performed often from their own living rooms. Each concert comes with a chat room that lets you connect with other fans and the artist themselves. Note, these concerts are typically only $5-10 to attend. Each artist sets the own price for their concert.

Find Something NEW On Your Streaming Services
If you’re having a hard time deciding what to watch on your streaming services, whether it’s Netflix, Hulu, what have you, try one of these websites to help you get some suggestions!
whatthehellshouldiwatchonnetflix.com
whatmovieshouldiwatchtonight.com
decider.com/what-to-watch

Tour Museums Online
Museums across the world are making themselves accessible virtually thanks to partnerships with the Google Arts & Culture project. You can tour the British Museum in London or the Uffizi Gallery in Florence without leaving your couch. The British Museum has its own, special website that you do NOT want to miss! This blog has also collected links to other museums that offer virtual tours who are not a part of Google Arts & Cultures along with other online exhibits, apps, and learning resources.

Stream An Opera
The Metropolitan Opera in New York City has begun streaming past performances every night at 7:30 PM EDT. This will give you the chance to see world class musicians perform classic operas for free from your home. 

Play Online Puzzles and Games
If all of that won’t do, how about some games? Try jigsaw puzzles on Jigsaw Explorer, games like word searches, crosswords, and sudoku at ProProfs, or Logic Puzzles at PuzzleBaron.

No matter what you’re doing during this time of unprecedented change, we hope you and your family stay safe. Don’t forget to check out the Dysautonomia International Coronavirus Information Page.

Stay up to date on the latest dysautonomia news, research and events by joining Dysautonomia International’s email list.

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We’ve received inquiries from dysautonomia patients who are having a hard time accessing their normal medical services and providers during the COVID-19 pandemic. Many healthcare facilities are postponing non-urgent appointments, surgeries and testing in order to minimize the risk of exposing patients and medical professionals to COVID-19.

Additionally, many medical professionals are being called to duty to serve individuals who have been severely impacted by the virus, or the are very busy answering many questions from their own patients. Please be patient with your healthcare providers at this time. They are facing the same challenges all of our families are struggling with, in addition to trying to serve their patients.

As much as possible, we should all avoid visiting hospitals at this time for non-urgent situations. Not only will this protect you from unnecessary COVID-19 exposure, it will also protect others in case you may have COVID-19 (you can infect others even if you don’t have symptoms). Read the CDC’s advice on what to do if you think you or a member of your family may have COVID-19.

Dr. Jeffrey Boris, pediatric cardiologist and Dysautonomia International Medical Advisory Board member, offered to answer some of the more pressing questions we are receiving from our patient community.

Q: I can’t get the IV saline infusions I have been receiving. What should I do?
A: It depends on how you have been getting the infusions.  Some people get them at their doctor’s office. Some get them at an infusion center. Some get them at home.  If you have been getting them through your doctor’s office or through an infusion center, speak with your provider and see if the infusions can be set up for you through a home health prescription.  It may take a bit longer to start, as the provider will have to get insurance approval. I would recommend against routinely going to your local Emergency Department for infusions, due to the risk of infectious exposure. If at all possible, you should increase your oral salt and fluid intake to compensate for the saline you are unable to receive.

Q: I can’t find the electrolyte drink I usually use. Is there a recipe for a homemade electrolyte drink?
A: You don’t necessarily need to have an electrolyte drink.  If you are taking in adequate amounts of fluid (2 to 3 ½ liters/day) and the equivalent of 1 to 2 teaspoons of salt per day through your food, that is actually quite good. There are salt capsules, such as Salt Stick Vitassium, that can help.

A homemade electrolyte drink can be a large glass of water with a little flavor, a little salt, and a little sweetness (to take advantage of the sodium-glucose pump, which helps you absorb fluids from your gastrointestinal tract into your bloodstream more efficiently). You can experiment with different combinations until you create a drink that you like. Here are some ideas.
Flavor: fruit juice, citrus, ginger, berries, melon or cucumber
Salt: any salt will work
Sweet: sugar, honey, or maple syrup

You can find Dysautonomia International’s salty snack and meal ideas here.

Q: I can’t get refills of my medication at the local pharmacy. Any ideas on how to get common dysautonomia medications without leaving home?
A: A number of insurance companies have a mail-order option, in which you get a 3-month supply sent directly to your home. Check with your insurance plan to see if this exists for you, then have your provider order it as a 3-month supply through the mail-order group.  Make sure that you get the name of the mail-order group working with your insurance company so that you can pass it on to your provider.

Q: I can’t get my fludrocortisone (Florinef) prescription refilled, but I can get licorice root. How much licorice root should you take to equal .1mg of fludrocortisone?
A: The short answer is that we do not know.  Licorice root is a supplement that is not overseen by the FDA, nor has there been adequate scientific study of it or its effects. Since it’s not overseen by the FDA, the amount (or contents) advertised on the bottle may not be what you’re actually getting. Also, the cleanliness of the plant as well as the supply chain of ingredients may be in question.

Q: I can’t get my midodrine prescription refilled, but I heard phenylephrine (Sudafed-PE) is a similar drug. Can I take this while my midodrine is out of stock?
A: Although phenylephrine is similar to midodrine, it’s not the same.  All of the research that has been done with it in POTS patients has been using intravenous infusions.  Thus, we do not know the appropriate dose, much less how long it would work.  The side effects associated with chronic use are also not known, except for rebound nasal congestion.  I would recommend against using this as a substitute. Consider using compression stockings (20-30 mmHg, waist to toe) while awake instead.

Q: My physical therapy appointments have been cancelled. What exercises can I do at home?
A: The modified Dallas (Levine) exercise protocol is available through the Dysautonomia International website. In general, you want to exercise recumbent (reclined, not upright, such as recumbent bicycle, swimming, or rowing machine), starting with 10 minutes per day, and increasing until getting to about 60 minutes per day by the end of the second month. You should be exercising about 5-6 days/week, which is a lot, but is very important to reduce symptoms. You should also be doing exercises to strengthen your core and leg muscles. With continued exercise, many people start to feel better by month 3-4. Exercise like this should be maintained indefinitely. Patients often state that they feel bad if they skip more than 2 days in a row. If you do have to skip, due to illness, back up 1-2 weeks in the protocol, and then pick back up.

Q: My psychologist/psychiatrist appointments have been cancelled. Where can I get mental health support at this time?
A: This is a difficult problem. I would definitely recommend contacting your psychiatric provider/counselor to find out how they are specifically the managing care of their patients. Some may be able to care for you by phone, others by Skype or FaceTime, others by a specific telemedicine link. Recognize that, due to everything happening in society at the present time, they are going to be overwhelmed with many patients requiring their attention, so try to be patient as you (and they) navigate this new, but temporary, reality.

In the US, your local affiliate of the National Association of Mental Illness (NAMI) may be able to suggest alternative local resources. 7 Cups is a free online source for emotional support.

If you missed our recent webinar, Coronavirus Q&A for the Dysautonomia Community, sign up for the Dysautonomia International email list to receive a copy.

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Robin and Hannah Lucas are a mother-daughter duo from Georgia who are very active in the dysautonomia community. They have been volunteers for Dysautonomia International for two years and Robin helps lead Dysautonomia International’s Georgia Support Group.

After Hannah was diagnosed with POTS at the age of 15, she struggled with her mental health. By the time they found Dysautonomia International, Hannah had been learning to manage life with dysautonomia for several years. Volunteering was a way for Hannah and Robin to help others and give back.

Hannah says, “I was bullied at school. I would wear my compression socks and get made fun of. It was hard and on top of it all I had anxiety about doing simple tasks alone, like going to the bathroom. What if I fainted and no one was there?”

With dysautonomia patients in mind and for anyone struggling with depression or anxiety, Hannah created the NotOK App. This app allows you to let someone know that you are not OK with a push of a button. Hannah and her brother Lucas developed the app, which has helped thousands of people. They’ve become frequent guest speakers on teen mental health at national conferences and in the media too.

Robin and Hannah attend their first Dysautonomia International Conference back in 2018. Hannah says, “[i]t was incredible to engage with other kids who had the same illness as me and it was amazing to see them living inspiring lives.” Hannah lectured during the teen program on how to stay positive while living a life with chronic illness.

Robin and Hannah appreciate the opportunity to learn from others on Dysautonomia International support groups, but they enjoy being there for other families too.

Thank you for everything you do for Dysautonomia International, Robin and Hannah!

If you’re interested in volunteering for one of Dysautonomia International regional support groups, please email Kirsten at kslowey@dysautonomiainternational.org.

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