It’s been crazy.
I’ve always loved the fall. It’s just a superior season to everything else, because I can finally break out my jeans and hoodies and large assortment of hats. And stop shaving my legs. It’s a good time to be a human being. Sure, season changes mean major pain for POTSies and patients of all forms of dysautonomia, but I think it all balances it out. I’d rather have body aches in the fall than feel pukey in the summer.
So, what have I been up to this glorious month?
I turned 26
My friends and I spent my birthday weekend having fun dinners, hanging out, and watching our favorite shows. Shira came out from GW and we had a great day catching up, exploring what little there is to explore in Fairfax County, and having an awesome dinner at Founding Farmers in Reston.
Shira and I met a nice panda bear outside of Founding Farmers
We also had a family dinner at one of my all time favorite restaurants, Sweetwater Tavern. I’ve gotten the same birthday dinner for the last several years, a filet and crab cake. Please, if you find yourself in Northern Virginia, treat yourself to this meal, because they know what’s up.
The best part of my birthday (besides spending it with my close friends and people reaching out to me to wish me a good one) was my birthday fundraiser for Dysautonomia International. I did one last year that I was super proud of—I raised $300, and my goal had been $250, $10 for every year I’d been alive.
This year I had the same goal, $260, $10 for every year of my life, and my friends and family went above and beyond in every way possible. The fundraiser ended with $801 total, a large part of that from my insanely generous big brother.
I’m so humbled by the generosity of my loved ones and the loved ones of my parents who donated—I’m so lucky, and Dysautonomia International is going to use this money for great things.
I taught my church group about dysautonomia
My church takes activities planning VERY seriously and named me one of the activities co-chairs last month. I told them it was a huge mistake, that I’d be bad at it (even though everyone else in my life said “oh, you’d be PERFECT for that!”), and my church leaders said, “oh great, a chance for you to grow!”
I wanted to make a bunch of turquoise ribbons and bags of candy for an event and had to think of an activity for one of our Monday night get-togethers, so I combined the two. I got to teach everyone about dysautonomia and POTS and put them all to work. It was great–there weren’t many people there that day, but they were receptive. They asked questions. They were surprised when they learned how common it was. And they were so helpful.
So, if you’re ever in my position: you’re an activities director with a need to plan something, put your church group to work.
The Town of Leesburg declared October Dysautonomia Awareness Month
Every year, volunteers for Dysautonomia International across the world reach out to their local government leaders to ask that they declare it Dysautonomia Awareness Month in their respective towns, counties, states. I did the same. The town council and mayor of Leesburg, VA issued a proclamation declaring it Dysautonomia Awareness month and I got to speak a little bit on why it’s so important that we recognize dysautonomia and its related disorders.
A group of dysautonomia warriors (including my parents and big brother) came out to accept the proclamation from the Leesburg Town Council
I hung out with some neurologists
Lauren Stiles, queen/President of Dysautonomia International (and really just queen of dysautonomia in general), invited me to be one of the exhibitors at the American Association of Neuromuscular & Electrodiagnostic Medicine Conference at National Harbor. I was excited for the experience, because I love a good conference, and despite living in the DC area, I’d ever been to National Harbor before. It was nerve racking though—while I love talking about dysautonomia and POTS to my friends and people I meet day to day, I’m very nervous when talking to doctors.
Lauren Stiles and me at our booth
I was very symptomatic, but I had a great time watching doctors get interested in dysautonomia at the conference. So many of them have dysautonomia patients but don’t have the resources to treat them, and Dysautonomia International is there to help by facilitating physician education programs with those doctors at their hospitals or universities.
I got a zebra friend from the National Organization of Rare Diseases
We lit up the Capital Wheel turquoise!
While we were at the AANEM conference, we planned a get together at National Harbor. We lit up the Capital Wheel at National Harbor turquoise as a part of Dysautonomia International’s campaign to #ShineaLightonDysautonomia this year and it was STUNNING. The first night of AANEM was the test run for the wheel and Lauren and I rode the wheel which was amazing. It was so beautiful up there—scary, but beautiful—and seeing a monument lit up for your organization and cause is exhilarating.
The night of our get together (that we intended to take big group photos with the wheel), had POURING rain, the type of rain where you step outside for two seconds and you’re soaked to the bone.
Still, a huge group turned out for dinner and we had a great time getting to know each other, talking about what does and doesn’t work for treatment, lamenting over how awful the barometric pressure changes have been making us feel (season changes are not kind to POTSies!), and adding salt to our food.
Dr. Abdallah and me! I haven’t seen him in months and I was so excited to tell him how well I’ve been doing. He was so happy and thrilled for me. He’s one of the most compassionate doctors in any field and dysautonomia patients are lucky to call him ours.
I launched Dysautonomia International’s 2018 Online Charity Auction
Over the last few months, I’ve been reaching out to independent businesses, online shops, artists, stores owners with connections to dysautonomia, and asking them to contribute to our online auction. I did this last year and we had great success, and I’m excited to see how it turns out this year!
Visit the auction here and bid on items before in closes on November 2!
My friends raised awareness
It’s been a great month. Busy. So busy. I love Dysautonomia Awareness Month because everyone rallies together to do their best work to raise awareness in 31 days.
One thing that really touched me was when my best friend Erin, dedicated her precious puppy’s first birthday to Dysautonomia International:
For being there. For reading my posts. For celebrating my birth month and my favorite awareness month.
It’s been an incredible October.
I can’t wait for next year.
NASHVILLE. MUSIC CITY. LAND OF HOT CHICKEN, BACHELORETTE PARTIES, AND TAYLOR SWIFT. (She does own like 10% of the city at this point, right? At least that’s what I’m lead to believe.)
And also home to this year’s Dysautonomia International patient, caregiver and physician conference! For the first time ever, we ventured away from our usual conference home of Washington, D.C. (much to my dismay) and got ready to party in the south.
Did you know that EVERYONE is friendly in Nashville? Well, at least everyone who works in the hotel I stayed at, the Target I went to, and the 4 restaurants I got to go to in my VERY limited time here.
So it’s almost been a month since the conference happened, I KNOW I SUCK AT BEING TIMELY, but I always write my recaps. #NEVERGIVEUP.
So at long last, here is the recap you probably didn’t want but are going to get anyway.
This is the first time I’ve ever traveled to DysConf. In the years past, the farthest I’ve gone is 45 minutes down the closest highway to my house.
I flew out of National Airport on Thursday, June 21. I arrived ridiculously early (I inherited that weird trait that every dad has that requires them to arrive at airports 2+ hours before the flight.) I stupidly didn’t request wheelchair assistance to the gate and ended up feeling exhausted at security. Thankfully, National Airport is relatively small (I’m looking at you, Dulles), and the trek wasn’t too bad.
While I was waiting for my flight, I was working on a presentation for the conference, and someone came up to me to comment on the Dysautonomia Awareness sticker I have on my laptop. We talked about how she’s been helping her mom who’s getting treatment and I directed her to the Dysautonomia International Physician Finder. It was awesome that all it took was my dysautonomia sticker to get to help someone and provide them with resources that could really change the direction of their treatment!
My flight was fine—I zoned out and listened to some great music and my playlist ended the SECOND the plane landed. Kismet? Definitely.
When I landed at the airport, I really regretted not requesting the wheelchair assistance. I didn’t anticipate my gate being so far away from baggage claim and I was exhausted from the flight. I wanted to stop in gift shops and maybe buy something kitschy, but I was too tired and knew I needed to get to the hotel, pronto.
I got to the hotel, checked in, and did a happy dance about having a hotel room to myself for the first time. I laid down for a while, charged my phone, and tried to recover from the flight.
Once I felt human again, I went downstairs to find my people (Dysautonomia International volunteers) and found Kirsten, our conference director extraordinaire, and Lauren Stiles, queen of all things dysautonomia, Dysautonomia International, and most things she encounters. Lauren and I went on a Target run with one of her nieces to get some cords we needed for laptops and snacks for the conference.
I found the IDEAL dysautonomia snacks all in one aisle—pickles, TURQUOISE snow balls, and ZEBRA cakes—but Lauren nixed the snack cakes because of their lack of “nutritional value.” Whaaaatever.
hunting for DysConf snacks at Target
After getting some decorations set up, Lauren, her husband Rob, their nieces Aly, Isa, and I headed downtown for dinner and settled on a place with rooftop dining—which was perfect, until we started to feel raindrops. We headed inside and ordered. Rob ordered hot chicken—which was supposed to be Nashville’s specialty—but it was a little too hot—I just sniffed it and my eyes watered. Then again, I am a wimp.
We had a fun time walking through the streets of Nashville back to the car in the rain. There were dozens of these “pedal taverns“—basically a GIANT bicycle that can support 15 people that doubles as a bar—going all through the streets of the city. People were getting very crazy and it was hilarious, and TERRIFYING, to watch. I also discovered “Goo Goo Clusters” at an ice cream shop we stopped at—they’re like a candy bar and they’re DELICIOUS. Props, Nashville.
We got back to the hotel and I checked in with my parents to let them know I was alive. Before bed, I also Snapchatted with Shira, Katherine, and Katie because it’s not officially #DysConf without them.
Snapchatting with Shira, Katherine, and Katie
Lindsey and me
On Friday Morning, I went out to the king of all breakfast chains, Waffle House, with two of my favorite people—Mindy and Lindsey. I’ve known this lovely mother-daughter duo for a little over a year now—they’re also from Northern Virginia and are an absolute dream of a family. They came down to Tennessee a few days early to sight see and ended up being a huge help to the conference even though they weren’t even signed up to volunteer. (#unsungheroes) (Also, they paid for my breakfast. So, #doubleheroes.)
After gorging myself on bargain waffles, I got to work stuffing and alphabetizing name cards, setting up goodie bags, and working on the bane of my existence: tissue paper flower ball things that did NOT want to fluff up properly. UGH.
The vibe of this year’s set up was so different, and that sort of set the tone for the entire weekend. New city, new people, new topics. Nothing bad—just new.
It was great to meet everyone though—I loved that we had so many first time conference guests eager to show up and volunteer, even though they had no idea what they were in for. That’s the real spirit of our community—we don’t really know what’s in store for us, but we’re ready to help each other. That’s what life is like with a chronic illness.
I think my favorite part of the entire conference was Friday night when the teens came in to do ice breakers and play games. I didn’t have to do *anything.* They all pulled up chairs, introduced themselves, and just meshed together. It was awesome. So many of these kids live in near isolation, are on bed rest and don’t get to go to school because of dysautonomia—so events like these are the only opportunity they get to interact with their peers. To see them get vulnerable with each other, to interact with such willingness, makes my heart beat so much faster and not just because I’m standing up or exerting myself.
I ran through my introduction, gave them info about the conference, and basically made a fool out of myself to make sure they knew that I was there for them the whole weekend and that they could come to me for questions. At the end of my spiel, someone asked me where I got my energy from. GIRL, I DON’T KNOW, because I haven’t had energy at that level since that night.
What I focused on most though was that I didn’t want them to feel like they had to be in competition with each other with their illnesses. No one has to be sicker than the other. We’re all sick. That’s why we’re at the conference. Let’s just be OK with that, and not compete, even though it’s SO hard not to sometimes. They took it great… and then went right back to talking and playing board games until well after 10 PM.
Before I went to bed, I ordered chicken tenders off Uber Eats and watched television until I was too tired to stay awake. (Self care, y’all.)
Amanda and her adorable baby boy
On Saturday, I participated in the fabulous Amanda Miller’s research study. Amanda and I met at the 2014 conference when she was just a wee Johns Hopkins student—now she’s married, has an ADORABLE baby, a Ph.D. and is a top dog POTS researcher. Can you say goals?
Amanda was brilliant in the design of her study: she didn’t require a blood draw like the last several conference research studies have. I was literally the first person to sign up because of it. So that confirms it, I *am* number one.
Amanda had some differing opinions though, apparently I complained a little bit more than the average test subject…
Listen, if you tried the cognitive tests she was giving me, you’d complain, too.
I learned something very interesting during the research study—it included an EDS screening, and guys… I DO NOT have EDS. I was diagnosed with it three years ago (almost to the day) but a doctor confirmed to me that I do not actually have it according to the Beighton Score. (Expect a whole new blog post about that.) My head’s still kind of spinning.
Lunch was pretty delicious—shout out to gluten free chocolate mousse for existing and being your best—and I got to catch up with Kyla who I’ve known for what feels like forever now.
I also got to meet Maya Dusenbery, author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick—the title pretty much explains everything you need to know. I bought her book and can’t wait to dive into it more and get REALLY angry so I can be further propelled into action.
Our BIG event was right after lunch—Nick Foles, Eagles Quarter Back and Super Bowl MVP and his amazing wife Tori Foles, were our special guests at the conference. They sat down to talk about Tori’s journey with POTS—when it showed up, her diagnosis, challenges with pregnancy, and her status today.
They are an awesome couple. So down to earth, focused on each other and their family, and they do whatever it takes to stay together and stay healthy. Best of all, Nick just released a book (Believe It: My Journey of Success, Failure, and Overcoming the Odds) and is donating part of the profits of the book to Dysautonomia International. (The rest of the profits go to other charities. Total class act.)
Chillin’ with the amazing Hannah Lucas of notOK
Hannah Lucas presented to the teens after that about her journey with POTS and mental health and talked about her app, notOK, which is a way to literally just reach out to trusted contacts and let them know when you’re not OK—like a digital distress call.
She and her brother (the coder of the app) are such gems of human beings and are so wise and mature, far beyond what should ever be expected of teenagers. (Ugh, you should have seen me at their ages.) They were such lovely additions to the conference, and they even gave me a #notOK t-shirt to rep which I can’t wait to bust out this summer.
Me, ready to present
After Hannah, I presented on How to Thrive in Middle & High School with Dysautonomia. It was the last presentation of the day for them and I could tell they had all pretty much checked out mentally. I felt so bad for talking when it was so clear they were exhausted—but I hope I shared at least one or two tips that might help them in conquering school.
I had some time to rest and refresh before the big banquet awards dinner that night. One of my all time favorite people, Amanda Staley, was honored with the Amelia Moore Sparkle Award. (Past recipients are Irina and Shira, both some of my other favorite people.) Amanda helps run the POTS Support Group and does so with such compassion and grace and we FINALLY met in person this weekend and GUYS she gives THE BEST hugs.
Amanda Staley, 2018 recipient of the Amelia Moore Sparkle Award, and just an all around wonderful human being
Dinner was a blast—I had a great table—aaaaaand then my stomach started cramping up. I took my meds, went up to my room to rest for about a half hour, and came back down, determined to enjoy my favorite night of the conference. (Plus, I wasn’t about to miss out on the photo booth.)
After taking some fabulous photo booth pictures—I decided to call it a night. I felt so defeated, but sometimes you have to let your body win. I considered it my stomach’s first win at a DysConf in 6 years, so:
Me – 5, Stomach – 1
On Sunday, I could not will myself to wake up on time. I was still hurting from the night before and finally rolled downstairs around 10:30. I wandered around, trying to help here and there, but mostly just tried to catch up with friends, new and old.
After a boxed lunch I shared with CeCe and Taylor (shout out to the best service dogs ever), I got ready for Dysautonomia Jeopardy for the teens. We had an awesome time—especially when it came to “The Medicine Cabinet” category—those kids were ready to fight. I thankfully had enough prizes for everyone (really lame things I picked up at Party City before I left on Thursday—treasure maps, bubbles, tiny tiaras) so no one walked away a loser.
After Jeopardy, I introduced Dr. Glen Cook’s session on exercise treatments for dysautonomia and I was so shocked when he remembered me from when I introduced his session last year. He is one of the kindest people I’ve ever met—and he has a huge weight on his shoulders as the only autonomic specialist for the entire military medical system. He does such important work and is a total gem of a human.
The conference wrapped up with the best session, a question and answer session for all of the doctors who were left at the conference.
Some of the best hits—
Clean up started as soon as the conference ended—I was completely spent and did the best I could here and there while saying goodbye to everyone.
Dinner rolled around and we got a group together to go out together. We headed back downtown in search of a place to grab drinks and appetizers and then dinner. Lauren desperately wanted to eat somewhere with rooftop dining and we walked up and down Broadway in search of that dream restaurant to no avail. We DID find a BBQ place that was playing Return of the Jedi and Family Guy on big screen TVs and served wine in plastic cups which horrified Lauren, since we had Dr. Hughes (as in Hughes syndrome Dr. Hughes) with us, who is a world famous rheumatologist and we were worried the classlessness would offend him. He had a good time though.
At dinner, I got to hang out with Amanda and Harrison and their baby, Asher, Kate, a volunteer, and Natasha, Dysautonomia International’s newest Patient Advisory Board member, who just launched the Sick and Sexy lifestyle brand which is super cool and you should check it out. I got a delicious BBQ chicken sandwich and mac and cheese, so I was a happy camper.
Amanda & crew, Kate, Natasha, and I headed back to the hotel in the best uber ever—free candy for everyone—and I got back to the hotel and packed everything up for my flight in the morning.
Every year, we’re a better, more efficient, better working machine—mostly due to our conference and events director Kirsten Slowey. She’s amazing and keeps all of us organized and in place.
Even though the programming gets better every year, I find myself wanting to stay behind the scenes, because I love the feeling I get from being a part of the machine that makes something this big and important happen. People’s lives change as a result of this conference. They get diagnoses. They get answers they’ve been searching for for years. They meet life long friends. They find doctors. They find that one thing they’ve needed.
These conferences have given me the things, the tools, the people that I’ve needed in my life. The confidence I’ve needed. The closure I’ve been seeking.
Everyone deserves the same. Thank you to everyone who makes it happen. From the bottom of my heart, I love you.
The Dysautonomia International Patient Advisory Board
Some people have a very distinct “sickaversary.” Others have a given “diagnosaversary.”
I have neither.
Developing dysautonomia was a slow burn, it developed just as my body did from pre-pubescence into adulthood.
And getting my diagnosis was a long, jumbled path. There was a distinct day my psychiatrist said, “I think you have POTS”—but keep in mind, that was a psychiatrist’s diagnosis. While we were very confident in him—as he had even suspected this years before—we still had to get confirmation from a cardiologist, a neurologist, a specialist, a whoever. And that was a nightmare, too.
So when I think about my journey with dysautonomia, I think about June of 2013, when my psychiatrist and first cardiologist said “POTS” as being when everything started.
Me, May 2013. This is exactly how I felt all of May and June. (Photo by Diana DiGangi.)
June was a disaster of a month. I had just left my dream job. In April, my psychiatrist put me on a very intense antidepressant that I reacted horribly to, but it required a slow withdrawal, and I was still recovering from it in June. The heat was unbearable that month. I was nauseated all the time, from the heat, the meds, and the POTS symptoms. I had frequent doctors’ appointments and testing—lots of blood work. I was doing my best to exercise, but it was HARD. And on top of that, the landlord of the house my family was renting passed away and we needed to find a new place to live.
In the middle of all of that, I was just trying to learn all about POTS. A lot of that time was spent trying to figure out the difference between POTS and dysautonomia (HINT for our newcomers: POTS is just a form of dysautonomia!)
My first cardiologist who diagnosed me with POTS did not want to use medication on me. He told me any medication would lessen the efficacy of my anti-depressants and at the time, we believed him. He told me that I had to exercise, and to start by taking a five minute walk every day for a week, and to increase the walk by one to two minutes every week. He told me that my body would hate it and that it wouldn’t feel good for a long time. And because he was so honest, I believed him, and I did it.
I hated it. Abhorred it. Detested it. I would take my walk, then come home and SCREAM about it. I probably burned more calories screaming about exercise than I did exercising.
I was told by every physician I was seeing (cardiologist, psychiatrist, gastroenterologist, primary care…) to stay hydrated. I got sick of all the water I was drinking, so I turned to electrolyte drinks as a treat.
I fell in love with Strawberry Lemonade Gatorade, which was then a limited edition flavor, available only at 7-11… until I harassed them daily on social media.
Stocking up on Strawberry Lemonade Gatorade with my friend Ksenia
(just for the record, because of my campaigning, #linfordversusgatorade, you can now buy Strawberry Lemonade Gatorade at Giant Food and other grocery stores across the country, not just 7-11. You’re welcome.)
During my daily research, I found out about the very first Dysautonomia International Conference. I nearly screamed when I learned that it would be literally down the road from our house. It was sold out when I first saw it, but I sent a desperate e-mail begging to be let in. Thankfully, they had a few last minute cancellations and were able to let my mom and me in for the conference held the first week of July.
June was mess of a month: the definition of chaos. But I was starting an incredible new chapter of my life, the one that would explain to me the pain and heartache I’d endured my entire childhood and adolescence. Now that I was really starting adulthood at age 20, I was finally going to figure things out.
So… five years later.
I wish I could say I had cured my POTS in the last five years, or that I was even feeling better… because I’m just not right now.
But I’m healing something even more important: a decade’s worth of feeling like I was doing something wrong.
Even if there is never a cure for POTS (which is a silly scenario, because there WILL be a cure for POTS, we’re getting closer every day) — diagnosis matters, because understanding that YOU are not responsible for your symptoms is so emotionally liberating.
I equated not enjoying time outside in the summer and not liking walks with being a “bad” person, because I was often shamed for being lazy, even if it was in jest. As someone who’s overly critical of themselves, I took this to a whole new level.
I had grown up assuming that everybody was experiencing the same symptoms as me but they could suck them up. And if they weren’t experiencing those symptoms, it was because they were healthier than me, and they had earned their health by being “good” and “better” than me, and my un-health was because I was “bad.”
My diagnosis released me from this horrific way of thinking about myself.
My diagnosis told me that I functioned completely differently, I hadn’t been making anything up, and that a morality spectrum didn’t exist in my health.
Since diagnosis, I am conquering dysautonomia in so many different ways.
Case in point: I SURVIVED THE TILT TABLE TEST IN 2014. (That is a badge of honor no one can take from me.)
I got to intern for Dysautonomia International over the summer of 2014, and was invited to join their Patient Advisory Board after my summer conference internship. I’ve since volunteered for every conference they’ve held and I’ve spoken at the 2016 and 2017 conferences on Coping Skills for Teens and Hope & Recovery Stories.
I’ve done two Lobby Days with Dysautonomia International and I got to be a group leader for one of them.
I can pronounce big, gigantic medical words, and long diagnoses: I can say “hyperadrenergic postural orthostatic tachycardia syndrome” in less than 2 seconds (yes, I timed myself using the stop watch on my phone) and talk about disorders that many doctors don’t even know about. (But if physician education starts with an informed patient, then I’ll learn!)
I have had more EKGs, echocardiograms, poor man’s tilt tables, holter monitors, than I can keep track of. I’ve had blood draws, I’ve done 24-hour urine captures (YEAH, ask me more about that one), I’ve done WEIRD medical testing (did you know that most weird medical testing involves putting some type of strange mask on you?)–and my parents have graciously paid more medical bills than anyone should ever have to.
I’ve helped organize fundraisers, I’ve run an online support group for teenagers with dysautonomia, I’ve made silly dysautonomia Valentine’s, I’ve walked a mile for POTS, and then volunteered at the same event a year later to get out of walking a mile for POTS, I’ve freaked out every time I hear dysautonomia mentioned on medical dramas, I’ve solicited friends for birthday donations for Dysautonomia International, I have hunted down famous people with POTS to try and become friends… I have so much more to do and I have no intention of slowing down any time soon.
Because I’m fifteen years in with autonomic dysfunction, five years in with diagnosis, and I’m just getting started.
staying hydrated with my Strawberry Lemonade Gatorade
Happy Rare Disease Week!
This is a tremendously important week to focus on advocating for recognition of rare diseases and the people who live with them, raising awareness of how common they are and how many people live with them, and teaching the public what needs to be done in the research community to eradicate them and/or help individuals live better lives with them. (Whew! What a sentence. Talk about run-ons. Please don’t tell my high school English teachers, they always got on my case about those.)
I whole heartedly support Rare Disease Week and the ultra superstar rockstars of it (lookin’ at you, Sick Chick Shira Strongin)—but I feel like it’s very important for me to use my voice to make some clarifications about the disorders I do live with—and to make sure y’all know, while I’m one of a kind, I’m not very rare.
I’m probably about as rare as these t-shirts (Photo by Diana DiGangi)
There’s a very common misconception that POTS, because it’s not well-known, is a rare disease.
This could not be farther from the truth.
The NIH says a rare disease in the United States is a condition affecting 200,000 or fewer people. According to peer review studies, POTS affects anywhere from 1 to 3 million Americans and according to Mayo Clinic, it can affect up to 1 in 100 teenagers. (Woohoo! I was one of those.)
The funny thing about POTS is that once you learn about it, once you meet someone who has it, you start finding POTSies EVERYWHERE. Immediately after my diagnosis, I found out that a girl I’d known for years was also in the process of getting a diagnosis. I threw myself into the POTS community, and people started sharing stories exactly like that with me. Their friends, their neighbors, friends from school and church, also discovered they had POTS soon after their friends got their diagnoses.
There are a few reasons POTS gets the misnomer of “rare.”
The primary reason is because of the lack of education surrounding POTS and dysautonomia in the physician community. You can always rely on the saying, “POTS is not rare, it’s just rarely diagnosed.”
The diagnostic delay for POTS is still in the ballpark of about six years—although it’s shortening all the time thanks to the efforts of Dysautonomia International. (Rock on, DysIntl!)
But I think there’s a another reason surrounding the fact that POTS carries the mistaken label of “rare.”
In our journeys through chronic illness, we’re often written off as “just another” patient by doctor after doctor.
I know with one of my doctors, I like to smile and say “hey, I’m one of your most complicated patients, right?” while they scribble away on my chart because it brings me comfort in that if my case is somehow special and complex, it validates the pain and suffering I go through. That if my pain was average, I wasn’t as much of a survivor.
I know that’s not true, but it’s a habit of thinking I get sucked into all the time, and I feel like this happens to a lot of us and the doctors we get shuffled around to see.
When the title of “rare” floats around and gets mistakenly applied to POTS, I think a lot of members of our community sometimes like to take it with pride and say, “hey, my journey is rare and unique because my disease is rare and unique!” even if it’s not true about the disease.
I know I wanted to do that at first too—the title of rare is all too appealing! It makes us different and exclusive, and it gives credence to the difficult journeys we’ve gone through.
It’s damaging, though. Because by spreading incorrect information about the illnesses we live with, we damage our credibility as a patient community, and we spread the notion that someone has to have a rare disease to live a unique experience.
I know for a fact that people with rare diseases do not feel that way at all.
And it’s critical that in order to be allies to people in the rare disease community, we respect the truth of our diagnoses and respect their space in our community of chronic illness. Everyone has a place in this community, and we need to respect the space that belongs to every one of us.
Since this blog is called Dysautonothankyou, I’d be remiss if I didn’t mention that there ARE rare forms of dysautonomia—I just happen to have the crazy common POTS. I wanted to list all of the forms of dysautonomia and mention which are common and which are rare—not as a “who’s who” but rather an educational reference.
(Unless stated, all of the following facts and statistics were gathered from Dysautonomia International.)
- Postural Orthostatic Tachycardia Syndrome – not rare – 1 to 3 million
- Neurocardiogenic syncope – not rare – “It occurs relatively often in all age groups, ranging from 15% in children aged under 18 years to 23% in elderly patients aged over 70.” -NIH
- Inappropriate Sinus Tachycardia – not rare – impacts 1.2% of the population
- Pure Autonomic Failure – rare
- Autoimmune Autonomic Ganglionopathy – very rare – approximately 100 Americans diagnosed a year
- Multiple System Atrophy – rare – 350,000 people worldwide
- Autonomic Dysreflexia – not rare
- Baroreflex Failure – rare – AHA Journals
- Cerebral Salt Wasting Syndrome – rare
- Diabetic Autonomic Neuropathy – not rare – estimated 69 million people worldwide (20% of all diabetics)
- Familial Dysautonomia – extremely rare – only 350 people worldwide
- Panayiotopoulos Syndrome – not rare – “13% of children aged 3 to 6 years who have had 1 or more afebrile seizures and 6% of such children in the 1- to 15-year age group.” –AAP Journals
- Reflex Sympathetic Dystrophy (Complex Regional Pain Syndrome) – somewhat rare – up to 200,000 individuals in the United States -RSDSA
Now, in the interest of full disclosure (after I’ve talked about how common I am), I *do* have Ehlers-Danlos Syndrome, which is a rare disease, but my subtype, Hypermobility Type, is one of the most common forms of EDS. (A common rare disease is kind of an oxymoron, I know, but work with me.) The NIH estimates that EDS occurs in at least 1 in 5,000 individuals globally, and EDS Hypermobility type occurs in 1 in 5,000 to 20,000 people.
While this makes me a rare disease patient, EDS doesn’t feel like one of my major illnesses. The three things I focus on every day are my POTS, depression, and anxiety.
Since I don’t always feel like I can hold up that banner of “rare disease patient,” (I need to work on feelings like I can “own” my illnesses), in the mean time I can focus on doing what I can do be a rare disease ally—which to me, means following the blogs and Twitter feeds of leaders of the community, sending some e-mails and making some phone calls to my legislators asking them to support legislation that favors the rare disease community, and doing my best to listen to stories.
Rare Disease Day is February 28, and I hope all of you with rare diseases will share your stories, and everyone who wants to support a great cause will check out some of these resources:
Given the fact that my favorite thing in the world is just sitting and talking or sleeping, it doesn’t make much sense that the highlight of my year is a four day conference that I spend the majority of each day on my feet, running around, making things happen. I *do* spend plenty of time talking, but there is so much activity that I sometimes wonder, is this really me? Is this the same girl who loves trying to break her record for how long she can sleep?
I’m a volunteer every year, so my #DysConf experience is very different than the average guests’. For me, #DysConf is non-stop. It pushes me to my limits physically, intellectually and emotionally. I usually spend at least a week recovering, which is why my recap takes a little while. (Forgive me!)
But even though I’m tired and sweaty and sore throughout those four days (and days afterwards), I love every minute. I love handing out badges and folders and goodie bags to people checking in. I love posting pictures to Dysautonomia International’s social media. I love helping run the teens program and being one of the first fellow POTSies first time guests meet. I love the Photo Booth at Karaoke Night. I love everything about it—because for four days, everyone gets me. Everyone can see in my eyes when I’m fatigued and they understand it. If I tell someone I *need* a 15 minute break to lay down, they know I’ve reached my limit and I’m not dodging responsibility—I really just need a rest.
I love this weekend because it’s the anniversary of when I was first diagnosed—when I jumped into this world feet first, and I finally had a support system that recognized, “Hey. You weren’t faking or exaggerating anything AT ALL.”
I love this weekend because not only do I get to be myself, I get to be more than myself. I get to help others in the same way that someone helped me a few years ago.
So every year, let’s do this. I can convince my body to keep going, going for #DysConf.
I arrived at #DysConf around 10 am on Friday. The hotel was just regaining power after a horrible car accident had knocked out the power in the area and blown a transformer. Tysons Corner is a CRAZY place for traffic (and one I’d avoid at all costs except two of my doctors are located in the heart of it) but thankfully things were lightening up by the time I got there.
The workroom for volunteers was full of boxes and desks and was the only legitimately cold/nice room in the conference area of the hotel (well, to me, at least. I’m overly sensitive to heat and sweat like a maniac.)
I got to work right away on stuffing folders with some other volunteers then moved over to loading flash drives with the PowerPoint presentations. (Yes, that’s done manually!) Katie, her mom, Emily and I loaded 600 flash drives using as many computers as we could find. (Katie had three, I had three, Emily was using her tablet.) Somehow we managed it within a couple of hours.
Every time a new volunteer showed up, we all got into a frenzy because it’s usually the same gang that signs up every year—over the weekend we morph into a hyper supportive family and it’s so good to see familiar faces.
And I can’t even tell you how happy we were when Elyse showed up—she’s the only person who could motivate me to take a spin class.
The infallible Elyse
Katie and I took a little time to cool down after setting up flash drives and getting cups set up for the goodie bags. We checked out our hotel room—on the 24th floor!—and had some snacks before we prepared ourselves for conference check in.
Being on the top floor, we had a view of terrifying clouds making their way into the area which was nerve-racking as conference guests were supposed to be landing at the local airports and driving in from who knows how far away.
When we were setting up check-in in the lobby, the storms finally started to break out. The lobby we were in was an atrium and at times the sound of the rain on the roof overpowered our voices. We were reading Facebook status updates from friends who were on airplanes trying to land at Dulles but were being diverted to Richmond because of how nasty it was (shout out CeCe)—I think the airport actually shut down at one point.
We kept going though—checking in soaking wet conference guests, giving them their freshly assembled folders, name tags, lanyards and goodie bags. Kyla and I checked people in together and competed for who could find the name tags quickest at our table and since I’m not sure if she reads my blog, I’m going to say I won. (Ha! Take that, Kyla!)
Katie and I FaceTimed Shira before we started our teens programming—Shira couldn’t come to #DysConf this year because of her health—but she was holding a Sick Chicks birthday party at home in California, so we introduced our attendees to each other and said “I love you” a million times.
Around 7, Katie and I started the teens program together. My loud voice came in handy for corralling kiddos and getting their attention. We did some opening ice breakers and had snacks with them, mingling over popcorn, pretzels and Gatorade. Katie ran through the conference programming with them and we invited them to play games with us for a while and tried to help the shy ones break out of their shells—it went especially well at the Apples to Apples table. (But doesn’t it always with that game?)
adding an additional hand to Dysautonomia International’s logo
I was running some other errands around the conference when Katherine finally showed up (she flew in from Boston after work—her flight was cancelled and we were afraid she wouldn’t get in until morning) and I lost my damn mind when I saw her. I hadn’t seen her since last conference (although we text preeeeetty constantly) so it was so. damn. good. to finally see her again. Katie, Katherine and I #squad hugged it out with her and then got anxious about seeing Daniel and waiting until we could FaceTime Shira some more.
We ordered a pizza and ate it on the floor of the staging room around 10 pm after Daniel FINALLY showed up—we’d been working ALL day and we were *READY* for dinner. My stomach hurt a bit afterwards (ugh) so I went up to bed early but I felt so much better when I took my evening meds and got to spend time with friends and looked over the schedule for the next day.
Everything hurt on Saturday morning. My body was so sore but we got up and ready to go.
#DysConf officially kicked off immediately after breakfast (which I wanted to stay at forever because there’s something about a buffet full of scrambled eggs and home fries that inspires me to never leave) and I was off in a storm trying to document everything for social media.
Every year I do social media for the conference and some years and some days I’m better than others. On Saturday morning there was tons of exciting stuff to check out—like an acupuncture session in the “Zen Room” which had sessions all weekend on things like yoga and meditation… and needles in your skin. People were loving it though and tried to convince me to stay when I popped my head in. (No thanks, just the idea of it made me tachy.)
Awesome quilt where people wrote their names, locations and length of time it took them to get diagnosed
Lunch was super fancy—we did an Awards Luncheon this year rather than the Awards Dinner like we did in the past. My friends and I grabbed a table up front so I could grab pictures (and also just so we could enjoy the show.)
Dysautonomia International celebrated its Five Year Anniversary and we showed a video that practically put me in tears. Ellen and Lauren handed out the awards which also warmed my sometimes-cold heart all toasty. Everyone who volunteers and puts their heart into dysautonomia research and advancement is such a superior class of human (in my humble opinion)—Erin and Taylor won Volunteers of the Year (they put on the Race to Beat POTS I went to!), Dr. Goodman won Physician of the Year and Irina won the Amelia Moore Sparkle Award which is so well deserved. Irina does *so* much thankless work, writes up so many explanations on the Dysautonomia International Facebook page and website and makes difficult to understand information accessible to everyone. She’s absolutely BRILLIANT. (#fangirl)
As many members of the Dysautonomia International Medical Advisory Board, Board of Directors and Patient Advisory Board that we could corral at lunch
In the time between lunch and the next set of sessions, I practiced for my presentation on Hope and Recovery, specifically aimed at teenagers. Unfortunately, I was crazy unfocused because I’d been running around all before lunch and now I was a little foggy after eating.
Katherine and I were two of the presenters for Hope & Recovery along with two absolutely lovely ladies, Tess and Emily, who knocked it out of the park with their speeches. I was insanely proud of all of them and so happy to be in their company, and was happy that we all got to deliver authentic messages that weren’t overly saccharine—just 100% true to our experiences. (This includes Katherine, in case I wasn’t being clear. Everyone is just amazing.)
Emily, Tess, Katherine and me coming atcha to give you hope
Afterwards, I literally ran to my next room where I co-presented on POTS in College with Jenny. This one got a *little* dicey. Our presentation was more in a panel format and we wanted a lot of participation from our audience—but it got a little out of hand here and there. There were disagreements about what colleges are and aren’t legally liable to do; what types of things “all” people with dysautonomia experience, etc., but I felt like we handled it well and that was confirmed to me a half dozen times by kind people who came up to me after the presentation who said we did great. (Thank you, kind people! I wish I could buy you an ice cream!)
Again, I had to run to leave that presentation and go straight to another room so I could introduce one of Dr. Glen Cook’s presentations. He’s been on the Medical Advisory Board for a year but I hadn’t gotten the chance to formally meet him yet. He’s super kind and I would have loved to talk to him longer.
After taking some pictures, I sat in on one of Dr. Opie-Moran’s sessions about relationships and chronic illness. I’ve gotten to know her at conferences over the last few years and can’t say enough nice things about her—she’s absolutely lovely and makes me feel calmer just in her presence. (She’s a psychologist, so that works really well for her.) I try to attend as many of her sessions as possible and take her ideas back to my therapist (I’m convinced they would work in the same practice if Dr. Opie-Moran didn’t live in the UK) and loved her ideas and the way she did her slides. (She always throws some jokes in.)
Good social connections give you better health! (Dr. Opie-Moran says so!)
Quick shout out to Crista who rescued me that afternoon as well—I can’t imagine how bad I looked but she saw me, forced me to sit and got me two water bottles and a bunch of salty snacks. Bless you.
Afternoon sessions closed up for the day and I got to talk to my Mom who was there for the day and lots of guests from the conference. I got to meet some of my blog readers (Hi Mindy and Lindsey!!!!!) and I hugged way more people than probably wanted to be hugged by me. (I’m very sorry, but that’s just how I get at #DysConf.)
Katie, Katherine, Daniel and I left the hotel and grabbed dinner at Silver Diner. We shared a disgustingly delicious plate of cheese fries (yummm) and I ate pancakes before we trekked it back for the evening.
We FaceTimed Shira in at dinner
We had to split ways for the night—we had some different responsibilities and Katie wasn’t feeling well—I mingled and talked more before hitting the dessert reception/karaoke party. I didn’t sing (well, not until Bohemian Rhapsody at the very end of the night with a huge group)—but I did take TON of pictures with lots of people.
I woke up the same way on Day 3—incredibly sore body, hungry for the breakfast buffet, but determined to get going.
Before I hit up the opening session, I got to try a free paraffin wax treatment on my hand which was awesome—it was SO hot but my hand that got the treatment (which are already pretty soft) felt even smoother even a week later it feels softer than the other.
I loved so many of the sessions of Sunday—there was an autonomic testing demonstration (the person who volunteered was so brave); Dr. Chemali, phenomenal neurologist and also an incredible pianist!, gave a session on the autonomic nervous system and music; and the phenomenal and perfect Elyse Schwartz gave teenagers much needed coping skills for life as only she can.
Elyse with teens
I was definitely slowing down by lunch and even though the conference was almost technically over, we still had tons to do.
I went in for the closing Q&A with the expert panel which is my favorite session of the conference. Sometimes the doctors like to trail off with hyper-detailed information that goes over most everyone’s heads, but what I love most is when they disagree with each other (yes! Conflict!) OR when I get advice or a new motto I didn’t know I needed. This year I got a couple new mottos–
Immediately following the Q&A, I said goodbye to tons of people who were leaving—I got to connect with so many people this year that warmed my heart in so many ways. I’m so grateful that a lot of them live in Northern Virginia so I’ll get to see them again before next year. (There are so many people that I’m forgetting to shout out to and I’m so sorry the names aren’t at the top of my head—but alas, still a week of brain fog exists.)
After hugs on hugs on hugs, I got to work on Lobby Day materials with Katherine (Queen of all things Lobby Day) and Katie. We made schedules for 150 people (the meetings had been updated by the congressional offices as early as that morning) and we got them knocked out right in the knick of time. (We also had to make use of the printers at the front desk because they weren’t working in the business center. Whew. Good times when someone asked me to check them in at the hotel.)
I met my team at Lobby Day training that night—we got to learn some of the in’s and out’s of what to ask for, how to ask it, and how to leave an impression with members of congress—(pro tip: personal stories are what matter!!)
I love #DysConf.
I was diagnosed mere weeks before the first #DysConf in 2013 and the hotel it was held in was down the road from the house we lived in at the time. Even though I got sick at the first conference and couldn’t stay (the air conditioning didn’t work and I couldn’t handle it), #DysConf has been my lifeline from that point—it connects me to my community and reminds me why I need to do some things that are scary, like call my members of Congress and push for them to advocate for me, and reminds me why I need to take care of myself in ways I really don’t want to, like exercise. (Yeah, it always come back to that one, doesn’t it?)
#DysConf is a testament to not having to be alone anymore. It’s how I meet and connect to people who support me and people I can support because I have grown stronger.
AND I HAVEN’T EVEN GOTTEN TO LOBBY DAY YET. (click here!)