I’m five years into diagnosis, and it’s only the beginning

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


I don’t know what changed in me, but it’s something big

CW/TW: mentions of suicidal ideation

My depression has a set pattern:

I’m well. Something trips up. I start to fall, fall, fall. I crash hard. I pull myself together. I get up. I get stronger, better, happier. I’m well again.

I’ve done this a hundred times in my 25 years. I’m an expert.

But when I did this last fall, something was profoundly different in the recovery process, and I have no idea what it was.

I’ve tried writing out this story at least two dozen different ways. Maybe I’m not ready to explore this topic, the memories of the last 9-10 months, but the blog manager in my head is very insistent on sharing something before Mental Health Month ends. So here we go. I need to give it a try.

*

Last fall was one of the hardest crashes I’ve ever had.

When I was at rock bottom, I was in a very primitive, protective mode to care for my mood, my feelings, my soul.

Spending time with friends on weekends took all of my energy. Going to doctors’ appointments was exhausting. I slept up to 14 hours a day.

I had a knot of anxiety in my chest more often than not. One of the only things that soothed me was watching the television show ER. It aired in a three hour block every weekday on Pop TV and it was the one thing I looked forward to every day.

The highlight of 15 seasons of ER for me: when Carter orders a tilt table test for his grandma and diagnoses her with Shy-Drager Syndrome, aka Multiple System Atrophy, a form of dysautonomia.

I remember crying in my therapist’s office once because I felt like I needed more than those three hours—I asked her to give me permission to ask my parents to buy season passes on Amazon. (It wasn’t available on Hulu at the time and I was too scared to ask my parents for a season pass without my therapist’s support.) She told me I would be just fine without it, so long as I kept my mind active.

She made me come up with lists of other things to keep me distracted from the horrific thoughts occupying my head at the time. The thoughts ranged from general hopelessness to vivid suicidal ideations to long lists of reasons why I was unlovable and everywhere in between. Even though when I’m healthy I have the skills to combat each and every one of those thoughts, I could barely function at the time. I couldn’t go through those exhaustive processes to defeat the thinking. Our strategy at the time was to divert and distract.

There were a few events in the fall that required me to save up all of my energy and put on a happy face. And some of those times, I was genuinely happy. But the crash afterwards was hard. Occasionally, going back to feeling horrible hurt even worse than if I had never had the good time at all.

A good day with Duke and Casey

*

I don’t know when it was, I can’t pin point when it happened, but in the climb out of this depression, I felt more stable than ever before in my life. It was like I had again seen the depths of what my depression was capable of, and now that I was watching myself climb out of it, I was seeing my own strength, and really recognizing it for what it was for the first time in my life.

I don’t know what day I started getting better. I don’t know when I first called myself “stable.”

But one day in November, I decided to stop at Trader Joe’s on the way home from therapy and TMS. I liked the feeling of being out of the house. I liked the freedom. I started going to Target on the way home from appointments for the same reason, and strolling around for up to an hour, just to stay out of the house.

One day, I responded to every single one of the e-mails and text messages I got. One day, I went to an event with my parents and talked to people I didn’t know.

And one day, I didn’t need to watch my three hour block of ER.

To outsiders, these were small, tiny steps. But to my parents and care team, they were huge.

I kept taking the small steps consistently.

Weeks later, Christmas rolled around, and I was out at midnight, grocery shopping for Christmas Eve, last minute shopping for my family, wrapping presents, enjoying the feeling of being busy. I didn’t cry on a holiday—maybe my biggest achievement yet. (I always cry on holidays. I’m the designated Christmas ruiner in the family.)

My friends and I went to the LDS Washington DC Temple Lights a few nights before Christmas. It was beautiful and literally and metaphorically electrifying. I felt so good to re-engage with the world, especially at the holidays.

In January, my TMS psychiatrist told me we would try going without TMS for a while. To see how I’d do.

I started making new, bigger steps.

I started going back to church, because I wanted to explore that area of my life again and I enjoyed the social component.

We started talking about some scary topics in therapy—but I could handle them this time rather than crumbling under the pressure.

I started very casually looking for jobs.

And in March, I got one.

I Tweeted this the day I got my job.

*

The entire time while I was making these steps, I would look back at how far I’d come, and the word that came to mind time was stable.

I wasn’t always happy. Suicidal ideations still came and went and I’d have to work through them. Therapy was hard. Really hard. But I was a different person than I was last fall. Much more like the person I wanted to become.

*

Again, I don’t know what it was. I don’t know what meds change it was. I don’t know what TMS protocol it was. I don’t know what conversation it was in therapy, what day it was, what thing it was my therapist told me that brought me this stability.

I do remember when the suicidal ideations stopped for a long period of time. I listened to a song from the Broadway musical Natasha, Pierre & the Great Comet of 1812 called Dust and Ashes in February, and it’s like it literally kicked the ideations out of my head for months. When I told my psychiatrist that a song from a musical based on Tolstoy’s War & Peace helped me defeat suicidal thoughts, he congratulated me on being the first person that Tolstoy’s writing had ever helped with depression.

But beyond that singular moment, this recovery process has been the culmination of months and months (well, years) of progress. And honestly, that moment when the suicidal ideations went away was probably the result of months of work, too.

Because now, I stand strong. It takes so much more to shake me. I tackle the big and scary in therapy. I can take on more without wearing myself too thin.

I can find ways to express my pain, my grief, in healthier ways. Crying as a release feels good, and doesn’t snowball into a panic attack anymore. Writing comes easier—even if I don’t like the end results, I am able to find the words to begin with. I like time spend alone driving, so I can sing as loud as I possibly can to my favorite playlists.

I finally feel like a 25-year-old, living a 25-year-old’s life—going out to dinner with friends, buying the things I want with my own money, talking and griping about work but still enjoying my job, having my own car… I feel fully alive.

*

Last fall, I thought that I was out of options. I was afraid that the meds, the TMS, the therapy, weren’t going to work anymore. Those were the lies my brain were feeding me. I was prepared to throw in the towel, whatever that meant.

I’m so glad I didn’t.

Life still needs a lot of work, but it’s doable. I can breathe now.

And now when I watch ER, it’s because I love the show, not because I need it to survive.


An FAQ on TMS and other acronyms

Two years ago, I told you about my experience with TMS, Transcranial Magnetic Stimulation. I told you how it pulled me out of depression like nothing I’d ever experienced before. How I relapsed, but I was waiting on insurance to approve another round.

Since then, a lot has changed.

In the Fall of 2016, I started a steady pattern of TMS that lasted a little over a year. We tried lots of different patterns, protocols, treatments. My doctor has been incredible, generous, patient, and kind. The technicians at my treatment center have been next level wonderful to me.

And last January, while I wasn’t feeling as fantastic as I did after my first round, we decided to give TMS a break and see how I’d do.

I stabilized. I’ve been steady for months. (Knock on wood, pray we don’t jinx anything.) I stumble a lot, but I keep picking back up. And I firmly believe it’s because of this last year’s work.

I reference TMS ALL the time, and wanted to answer a lot of questions people might have. And even if you don’t, here’s some answers anyway.

sitting pretty getting Thetaburst TMS on the MagVenture machine

sitting pretty getting Thetaburst TMS on the MagVenture machine

What is TMS?

TMS is a type of therapy for treatment resistant depression. It sends magnetic pulses to parts of the brain that control your mood.

As my treatment center, Greenbrook TMS, explains it:

TMS Therapy works by delivering magnetic pulses to specific areas of the brain involved in mood regulation – areas known to be underactive in those diagnosed with MDD. The magnetic pulses stimulate brain cells, thereby improving the brain’s ability to regulate mood.

Does it hurt?

Kind of. Really, it’s more annoying than painful.

It feels like a woodpecker is tapping at your head and trying to get through your skull to get to your brain. It’s frustrating. It sounds weird. But you get to watch TV, so that’s a plus.

The first few sessions leave you a little sore and uncomfortable, but Advil will fix it right up.

I can’t stress enough though how fast you get used to it. At first, I swore up, right, down, left that I’d never be able to withstand that awful machine. By Week Two, I was taking naps during treatment.

What are the side effects?

Scalp discomfort, headache, neck pain.

The only noticeable thing that happens to me during treatment is twitching of the face and hands. I’m an abnormally twitchy patient (any twitching can usually be alleviated by repositioning the magnet, but my TMS techs and I gave up a long time ago because no matter what, I just twitch.)

There is a small risk of seizure with TMS, but those who administer it are trained in how to respond.

So, is this ECT (electroconvulsive therapy)?

Absolutely not.

ECT uses electrical currents to induce seizures and “restart” your brain or reverse a lot of symptoms of depression. TMS sends magnetic pulses to your brain to stimulate different parts of your brain associated with mood.

They’re VERY different. ECT requires anesthesia and must be done in a hospital under the care of a team of doctors. TMS can be done in doctors’ offices by trained technicians. (Although your initial appointment where measurements for “motor thresholds” are taken are done by doctors.)

You are awake the entire time you have TMS and have full control of your faculties.

Does it work?

For me, yeeeeeeep. And for a lot of people, yeeeeeeep.

How long do you have to get treatment for?

The standard course of treatment is 5 days a week for 6 weeks, and then a few extra visits to taper off and for maintenance.

Your doctor will decide on what “protocol” to give you. I’ve had many protocols… the most standard is probably a 40 minute treatment on one side of the head. You might get a second treatment on the other side for 20 minutes. I’ve had one protocol called “Thetaburst” on a machine called the MagVenture that only lasted about 7 minutes.

It totally depends on the machine, the doctor, and what you’re being treated for—anxiety, depression, both, etc.

Do you have to stop taking your anti-depressants or stop going to therapy?

Nope! I’m still on several of the same medications I was on when I started TMS in January of 2016. Follow the advice of your TMS psychiatrist and your regular psychiatrist and communicate with them.

The most important part of TMS is that you have an aftercare plan. Continue seeing a regular psychiatrist and therapist when you leave, to continue good mental health practices, and the second you notice something is wrong, get right back in to see your TMS physician.

Didn’t you have this and then relapse a bunch?

Yes. And then I went back to TMS.

And it worked again.

When I first started TMS, I was told I had a 70% chance of relapse given my medical predispositions, but a 90% chance of TMS working again. I did it anyway, because honestly, those odds are still pretty good.

I know everyone is looking for the magic thing that works once and works for good, but that might not exist given the nature of what we’re treating. I was watching 60 Minutes, and a psychiatrist, Dr. Charlie Welch, explained it perfectly: “the nature of depression is that it is usually a relapsing illness.”

It’s true. I have relapsed more times than I can count with this illness throughout my life, which is why now that I’ve found the treatment that alleviates pain the best, I’m not letting go.

A lot of medications don’t work on me. It’s always very “guess and check.” But TMS is much more consistent. It keeps working, just like how Cognitive Behavioral Therapy has been steady with me, it just needed something else to boost it.

But how can you say it worked? How do you know it worked? How can it be working if you keep relapsing?

When I relapse, I go into a state where I physically and emotionally cannot function in the world. I withdraw. I stay in my room out of fear, not enjoyment. I don’t engage with my family, my dogs, my friends. I don’t respond to texts, tweets, posts, anything—because just holding myself together and just breathing is too much.

There are varying degrees of relapse for me, but the worst is when I feel too scared to talk to my parents. I know I need help the most when I’m the most afraid to ask for it.

When I’m good, when therapy, medication, everything works? I’m not necessarily jumping off the walls happy (although sometimes I’m laughing hysterically at my own jokes)—but I’m in and a part of the world. I’m running errands. I’m driving myself places. I’m making plans. I’m responding to texts (or forgetting to because I’m actually busy.) I’m doing laundry and making dinner or getting Orange Chicken at Panda Express. I’m procrastinating something and binge watching ER because it’s FUN, not because it’s my only coping mechanism.

When I go from hibernation to living, and living for extended periods of time, that’s how I know TMS is working.

What are the requirements to get TMS?

I can’t speak for all treatment centers and insurance companies, but I had to verify that I’d undergone Cognitive Behavioral Therapy, had tried at least four different medications in the past (try 25+), and my psychiatrist wrote a referral for me.

People with metallic objects in their heads are ineligible for TMS.

And the most important question…

Why do you keep writing about TMS, a depression treatment, on your blog about dysautonomia?

When I was 21, I was supposed to get ECT.

It took me months to come to that decision. It was one of the scariest and hardest decisions I ever made.

When my psychiatrist first told me he wanted me to have ECT, I started hyperventilating, crying and nearly ran out of his office. (I was instantaneously reciting Sylvia Plath while scenes from One Flew Over the Cuckoo’s Nest played in my head. NOT PLEASANT.) My doctor calmed me down, explained what modern day ECT is like, WOW we’ve made progress, and told me he really believed this could change my life for the better.

I spent an entire summer talking with my family and my therapist about the decision—I learned how safe it was, but I also learned the risks, and I finally decided I was ready. That I was going to have it, I was going to get better and finally beat depression.

And then my cardiologist who treats my POTS told me in no uncertain terms I was not to undergo ECT. That he would not be signing off on it. That while it’s incredibly safe for the average person, it was too risky with my POTS. We needed to find something else.

I went back to my psychiatrist. I was broken. I had been so ready for this huge step, and now it was whisked away. For over half of my life, I had tried everything to fix my depression, and now my last option, ECT, had been taken from me.

That’s when we started talking about TMS. It had never been in the picture before because it wasn’t covered by our insurance at the time and the out of pocket cost was $15,000.

At the time of that initial conversation, I was stable. We did everything we could to sustain it, and it lasted about a year. And that’s when we turned to the insurance company, got TMS approved (by the grace of God), and started the process in January of 2016, when I was 23 years old.

Long story short:

Many psychiatrists believe ECT is the most effective way to help patients with severe treatment resistant depression. But for many patients who also suffer from dysautonomia, it’s just not an option.

But TMS *is.*

And it’s a really, really, really good one.

*

Sources


I’m going for the title of World’s Worst Patient

I don’t want to go to my cardiologist.

I can’t remember the last time I saw him.

It’s nothing personal. The farthest thing from it, really. He’s lovely. So is his wife who is another doctor at his practice. They’re kind, spend a lot of time on their patients, and they know what they’re doing. Best in the business.

But I don’t want to go.

I’ve gone too many times.

I am so, so, so burned out on these long appointments with sitting and standing and getting electrodes stuck on me and echocardiograms and surprise stress tests and vasovagal testing that makes me almost faint and worrying that they’ll find out something terrible or that I’ll feel terrible about myself or—

I just don’t want to go. I don’t want to go.

When I started seeing this doctor, I had to go every two weeks. The appointments lasted hours.

They switched to every six weeks. Then every six months.

And then I cancelled an appointment last October and forgot to reschedule and I don’t know how long it’s been and I don’t want to go back.

I’m not feeling great.

I’m out of breath and close to collapsing every night when I climb up all four stories of our house at the end of every day. I’m totally spent when I walk around at Target or go grocery shopping. Something’s wrong with my foot and I’m walking funny—but I don’t think a cardiologist can fix that. Although he’s pretty smart, so maybe he can.

But I also don’t want to give up a precious day off of work to a marathon day of testing. (Dr. A and his practice is thorough above all else.)

I know I need to grow up, be an adult, see my doctor. I know I need to stop acting like a kid.

But it’s really easy for morale to get low with POTS—because there are days where I go from feeling GREAT to feeling like garbage in seconds and that type of whiplash is incredibly discouraging.


That reminder just crushes your mood, your hopes, your everything. And it fuels the “why bother seeing the doctor?” thoughts.

But I have to remember the advice and guidance of my therapist—even if I can’t get some type of cure from my doctor at a visit, every visit is for the purpose of gathering data. Getting more information. Even if we can’t use it now, maybe it can be used in the future. Maybe it can be used for someone else. We’re just tracking things and taking notes.

So.

I scheduled an appointment for the end of the month.

I’m not happy about it, but I’ll be there. Probably with a not-so-happy face on… but I don’t think that’s a requirement for his visits. (If they were, he’d be out of business.)

(If you’re in the same place as I am… I feel you. Doctors’ appointments are such a hassle. Just do your best.)


What I need you to understand about POTS and rare diseases

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.

Photo of Shannon holding two identical shirts saying "One of a kind"

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: