This is Shira Strongin. She runs the blog and community The Sick Chicks which is pretty great and you should head over there sometime soon if you aren’t already familiar.
Shira received the Amelia Moore Sparkle Award at #DysConf recognizing her advocacy for fellow dysautonomia patients
We met this year at the Dysautonomia International Conference and became prettttty good friends and the fact that we weren’t best friends until now is a crime.
Shira and I got very close very quickly. Katherine approved.
Along with our #DysConf buddies, we ate a lot of kettle corn, sang songs from Hamilton, had a lot of fun with emojis and social media’d it up. (#DysConf is the best parts of summer camp combined with a medical conference. It’s everything you never knew you needed.)
Anyways, when this excellent human isn’t busy battling chronic illness head on, she’s advocating on behalf of fellow Sick Chicks, rare disease patients and chronic illness spoonies while being a catalyst for making meaningful legislation happen. (NO BIG DEAL, except it is.)
Shira’s current projects are helping push the 21st Century Cures Act and OPEN Act through Congress. Because yes! Citizens are a part of the legislative process. (See: Schoolhouse Rock for some basics.)
So rather than macerate the descriptions of Cures and OPEN Act, I went to the source to get the best information possible. Also, because only Shira can answer a few of these questions.
Q&A with Shira
How are you?!
Missing you! Health wise though: I’ve had quite a few bumps in the road recently, but that’s part of the life with rare disease.
(editor’s note – I miss her, too.)
How long have you been working on 21st Century Cures and OPEN Act?
I’ve been working on both Cures and OPEN Act in various ways for a little over a year now, so pretty much since when they were introduced, but it’s crunch time right now for Cures as the vote is coming up in September, which Senate has been pushing off even after it overwhelmingly passed in the House.
Explain Cures and OPEN Act in emojis OR 10 words or less
Oh heck yeah, I’m doing this in emojis
21st Century Cures Act
What is the most important thing you want everyone to understand about these pieces of legislation?
Okay, so I’m going to have to say two things:
- Cures are for everyone
- Yes, 21st Century Cures is extremely costly, but progress always is. What better thing to invest in than our future? By investing in healthcare we are literally doing that.
What can rare patients, Sick Chicks and chronically ill patients look forward to if these pieces of legislation pass?
Basically an overhaul of the currently malfunctioning medical system, and turning the focus around on; discovery, development, and delivery through:
- More research
- Increased funding for the National Institute of Health
- More clinical trials
- Better and more affordable access to medications (including off label medication)
- Precision medicine being practiced
- For rare disease patients, with OPEN Act, current off label treatments have the potential to become approved therapies
Why do these things matter outside of the rare disease and chronic communities?
- 1/10 people have a rare disease. Even if you’re not affected by a rare disease, everyone knows someone, so care for you sibling, your parent, your weird-distant cousin.
- If 1/10 people have a rare disease, imagine how many people have more common chronic conditions? Same logic applies.
- Just because you might not be sick now, [it] does not mean your future is guaranteed. And because of that “in case” we all need to be aware of major health legislation like Cures and OPEN Act that will be life changing and saving.
- Health is a universal, bipartisan issue. We need to step up and show that we give a damn about our future.
Why is amplifying other youth voices in your advocacy important to you?
Youth are the future. Every piece of legislation in talks now affects us so greatly because these are shaping our future. As someone whose future is always called in question, confidence and having say in your future is powerful.
Because of my health I’ve had to accept how much of my life is out of my control, but being involved with legislative advocacy allows me to take back some level of control. I want others to realize what a unique and important voice they have along with just how much of an impact they can make.
With Cures and OPEN Act being health policy, I think it’s even more important youth voices are heard because for many of us without this legislation we will most likely not have a future. We are running out of time, and we need #CuresNow.
What is the best way to get involved?
In Sick Chicks I wrote a post about “The Fight For Cures Now” with some action items, and I’ll list some here as well!
A million thank yous to Shira for (1) being generally great, (2) acting to make real, positive change happen for people who need it, (3) DOING ALL OF THIS WHILE SHE STARTS HER SENIOR YEAR OF HIGH SCHOOL. This girl can get it.
And I encourage you to support these acts. I’m not claiming to fully grasp or understand how any of this will work out should they become law. But I do know that there are people much smarter than me who believe in this legislation, understand it, and know how to put it into action so that people like me, like Shira, like our friends and our loved ones and people we have yet to meet, can live better, healthier and longer lives.
Seven years ago today, at the age of 16, I had a major POTS episode. But at the time, I didn’t know it was a POTS episode. I was undiagnosed and blamed the whole event on myself, my interpretation of my own laziness, my inability to take care of my body.
My heart rate was sustained at 180+ BPM for close to two hours with a mess of other symptoms (nausea, blurred vision, I was white as a ghost, pain in all of my joints, etc.) and I ended up sleeping on the floor of the bathroom with gastrointestinal problems. My mom tried to take me to the emergency room but I was a headstrong teenager and refused. I reasoned that I was just having a stomach flareup and the tachycardia was a response to me being very out of shape after doing a bit of running around in the heat of summer.
Because for years, those were the things my cardiologists had told me when we asked about my tachycardia.
“You’re fine, you’re just out of shape.”
That night, my mom texted my psychiatrist, the only doctor along with my therapist who believed there might be something else at play besides “harmless” tachycardia. He told my mom to take me to urgent care as soon as possible.
They performed an EKG and they said there appeared to be nothing wrong, but sent me to the hospital where they performed an echocardiogram. Everything was structurally sound. We made appointments with my cardiologist. I didn’t get much help there.
You’re fine, Shannon. Drink more water. Add more salt to your diet. But you’re fine. Nothing’s wrong.
They did a holter monitor a few months later. They never really addressed the tachycardia, the fatigue, the chronic pain, any other symptom. They just referred back to the EKGs and echos. You’re fine, Shannon. You’re fine, you’re fine, you’re fine.
Seven years later, to the day, I just finished up my fourth conference with Dysautonomia International.
For four years, I have now known that I’m not “fine.” My autonomic nervous system is a disaster. Standing up, even for 10 minutes, makes me lightheaded, gives me brain fog, turns my hands bright red and makes my back feel like a twig that might snap into two.
For four years, I have had a new team of cardiologists who believe me. They run EKGs and echocardiograms and holter monitors and even when they come back “fine,” they know that the rest of me isn’t. They know that I navigate a long list of symptoms every day of my life and there’s no saying what comes next symptomatically.
For four years, my psychiatrist and therapist have been able to help me cope and learn to navigate my new normal, my new life with a chronic illness. It’s not easy, it’s not fun, but we now know what we’re dealing with. We know the card we’ve been dealt. We’re no longer in the dark.
I’m so grateful to be here, now, with the resources available to me so I feel less alone. To have friends, support, physicians and information that will keep me going for as long as I have this illness (very possibly the rest of my life.)
I’m had such a lovely weekend surrounded by hundreds of people with this shared experience of dysautonomia–whether it’s the patient or caregiver perspective, we’ve all gone through the journey of “WHAT IS HAPPENING” and have gotten to (or will get to) “OK, we got this.”
It’s not the same as it was seven years ago.
I’ve been a volunteer with Dysautonomia International since 2014 and the biggest part of our year is the annual patient conference. This is my fourth year attending the conference (four for four!) and the third year as a volunteer. I am as excited as ever because this year has some really exciting things in store.
I’m local to the area but this is the second time I’ll be staying at the hotel so I can waste less time driving and sitting in traffic and spend more time with friends, learning and gearing up for more fun at the conference. Every time I get ready to stay at the hotel and pack though, I feel like a deer in the headlights. What to bring? What to leave at home?
To save time, I sat down and figured it out. Here’s my finely tuned packing list. You can trust me, I’m a #DysConf expert.
Turquoise, because #MakeNoiseForTurquoise
Your shirts, your pants, your dresses, shoes and underwear. Even if we can’t see the turquoise you’re rocking, wear it anyway and get in the mood because this is the ultimate in Dysautonomia Awareness Weekends.
Everything you need to function. Your pills and vitamins, your compression stockings, your binders and braces, your special pillow that puts you at an incline so you can finally sleep properly. Start your personal packing list tonight and work on it every day as you use your “must haves” so you know it’s complete.
A couple of snacks
The conference will provide water and salty snacks but I like to bring my water bottle, a daily Gatorade and a few of my favorite treats so my own daily routine is consistent. (Gotta have those 2 PM pretzels.)
Comfortable clothes for conference sessions
Keep it casual and comfortable during the day—the schedule is busy so don’t sacrifice feeling well for looking high fashion all day, unless you finally unlocked the secret to cozy couture.
A light jacket or sweater
Even though it’s the height of summer in the muggy Mid-Atlantic and the hotel staff goes above and beyond making accommodations comfortable for us, the indoor temperature can fall and rise depending on the size of the room and how many people are in there. Bring a light sweater or jacket so you’re not left sweating or shivering.
An outfit that makes you feel fabulous for the awards banquet
The Saturday night awards banquet is all about dressing up and having fun. It’s cocktail attire so no need for prom dresses and tuxes–wear something that makes you feel as great as you are. If you need ideas, check out the Facebook albums of past conferences.
A swimsuit and/or workout clothes
The hotel has a pool, hot tub and fitness center for your daily exercise or if you want to relax at the end of the day.
Your favorite pajamas
There will be pajamas parties aplenty so be prepared. Extra points for bunny slippers.
Photographers will be all over the conference but they won’t be able to get every one of your selfies, pictures with new friends and every funny video of karaoke night. Take tons of photos this weekend and share them with us online with the hashtag #DysConf, we would love to see the conference through your eyes.
Extra space in your suitcase
As always, there are awesome baskets up for bid at the silent auction and a merchandise table at the vendor fair. There will be shirts, jewelry and books for sale by presenters.
A notebook & pen
I like to get a cheap notebook before the conference as my “everything” notebook for the weekend. Combined with the slides that the doctors are usually generous enough to share with conference attendees, it becomes my resource for dysautonomia information, thoughts and information. I like writing down quotes that resonate with me, possible symptoms and syndromes that I want to look into more with my team of doctors, contact information for new people I meet and even funny doodles.
Something to wind down with
The conference is busy and exciting and even though you’re going to have a blast, it’s good to take a break during the day and calm down at night with a book, some relaxing music or a TV show on a tablet or computer. Bring some ear buds, your iPad or Kindle or your favorite paperback.
If you plan on sight seeing downtown D.C., bring:
- lightweight and light colored clothing
- the most comfortable walking shoes you own
- sunglasses, hats, sunscreen (yes, all three!)
- your water bottle
And word of advice: schedule way more time than you think you’ll need, especially if you’re taking the metro. It’s going through a rough time right now.
If you forget anything, don’t panic! The hotel is located in Northern Virginia where a fundamental truth stands: you are never more than 15 minutes away from a shopping center. There are grocery stores, pharmacies, hospitals, shopping malls, all steps or mere miles away. If you’re without a car, there’s a high likelihood you can become good friends with a local at the conference or a volunteer who can give you a ride, so no worries.
So get your bags ready and we can’t wait to see you!