I sit before you today asking for your support of Dysautonomia International so that one day, I’ll be able to stand before you.

When I was 18, my doctor diagnosed me with a debilitating, chronic medical condition called dysautonomia. Currently, there is no cure. Dysautonomia means that my autonomic nervous system doesn’t work. Therefore, my body cannot regulate things like my heart rate, my blood flow, my breathing, or my digestion. This means that every minute of each day, my body is overworking to try to compensate. This leads to symptoms such as fatigue, headaches, nausea, reduced concentration, chest pain, and shortness of breath.

More importantly, it means that I can’t stand for more than a few minutes without fainting. It means that I need at least 12 hours of sleep each night. It means that I burnout after about two hours of concentration. It means that things you don’t even think about doing are nearly impossible for me. Things like standing in line, showering, running to catch a bus, or walking up stairs.

Dysautonomia means that I will never again be able to attend a standing-room only event. It means that I will never again be able to take a dance class. It means that I will never be able to travel around the world. Or hold a full-time job. Or raise a big family.

Given all this, you may think that the day I learned I have dysautonomia was the worst day of my life. That couldn’t be farther from the truth.

For a time before my diagnosis, I was feeling sick. But no one knew what was wrong with me. Because I couldn’t eat without becoming nauseous, I was 110 pounds. So my doctor was ready to diagnose me with anorexia and refer me to a psychiatric hospital.

I was one of the lucky ones. A week later my doctor diagnosed me correctly and I started to get the care I needed. Plus, in dysautonomia time, a few months before a diagnosis is nothing. My friend Kate received her diagnosis ten years after her symptoms started. Some people never receive a correct diagnosis. I have friends with dysautonomia who received a diagnosis of Munchausen syndrome. Of Histrionic Personality Disorder. Of Bipolar Disorder. Some people are told that they are just making it all up.

None of this would happen if more people, especially health professionals, knew about dysautonomia. That’s why Dysautonomia International exists. Dysautonomia International works to raise awareness of dysautonomia within the medical profession. It provides accurate information to practitioners on the latest diagnostic methods and treatment options available. It also works to increase awareness and recognition of dysautonomia amongst the general public.

In the three years I’ve lived with dysautonomia, I’ve gone to the hospital 7 times. I’ve disclosed my illness to 28 professors. And I’ve shared my story with countless friends and family members. Not one of the doctors in the hospital, or professors at my school, or people in my life had ever heard of dysautonomia before.

Your support of Dysautonomia International means that next doctor that sees a girl with my symptoms will test her for dysautonomia. It means that the dysautonomic high school student needing accommodations won’t be told that their school doesn’t recognize dysautonomia as a valid disability. It means that the government won’t reject the dsyautonomic college graduate for disability aid. It means that one less parent has to fight with their insurance company to get their child’s dysautonomia medicine covered. It means that one day, dysautonomia will be curable.

Give to Dysautonomia International, and one day, I’ll be able to thank you with a standing ovation.

Guest Author, Samantha Steinfeld, 26, wrote this essay for a speech writing class. She was diagnosed with POTS during her freshman year at American University and with the support of her family, friends, and POTS community she was able to graduate from college and now works at a non-profit in Washington, DC. In the fall, she will begin a graduate program in clinical mental health counseling, which she decided to pursue after experiencing first-hand how much mental health services can help teenagers and young adults living with chronic illnesses. 

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Time for a little #SillySaturday dysautonomia humor…

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt (salt salt salt salt)

Yeah it’s pretty clear, I ain’t no size two
But I shake it, shake it, like I’m supposed to do
‘Cause I got that boom boom that always seems to race
Not enough blood, in all the wrong places

I ain’t like other girls, workin’ that low salt stuff
Some docs think this ain’t real
Wish I could make it stop
If you got tachy tachy just raise ’em up
‘Cause you gotta get blood flowin’ from the bottom to the top

Yeah my doctor she told me don’t worry about your hives
She says increase salt & fluids and everything will be alright
You know I won’t be no stick-figure silicone Barbie doll
So if that’s what’s you’re into
Then go ahead and move along

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, hey

I’m bringing saline baaaaaack
Go ahead and tell them naysaying doctors that
Hey no, I’m just playing, I know they think its wrong,
But it’s better to stand up than to be in bed all day long,

Yeah my doctor she told me don’t worry about your hives
She says increase salt & fluids and everything will be alright
You know I won’t be no stick-figure silicone Barbie doll
So if that’s what’s you’re into
Then go ahead and move along

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt

Because you know I’m all about that salt,
‘Bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt, no pepper
I’m all ’bout that salt, ’bout that salt
——–

To learn more about eating a high salt diet to help manage dysautonomia symptoms, visit our Please Pass the Salt blog post or dysautonomiainternational.org/salt.

Original “All About That Base” song by Meghan Trainor.

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It has been four years since receiving a diagnosis of postural orthostatic tachycardia syndrome (POTS) and I am still learning how to accept my illness and live life to the fullest. However, the past has been weighing me down. Especially when I reflect on the struggle of fighting for a diagnosis, so I wrote down everything that I wish I could say to those who have made my struggle harder. Here it goes…

Dear Dr. X – I wasted four years of my life because you wouldn’t listen to my symptoms. You couldn’t look past the extra weight that I carried to actually go over my history. To this day, I cannot believe you told a vulnerable 15-year-old girl that she was “too fat.” I told you I played soccer for 10 years and had to stop because of my symptoms. All I wanted was my life back. I knew something was wrong, and if you actually did your job, you could have told me that.

Dear Dr. W – I came to you after the other specialists turned me away. You blamed me for being sick. Then, when you said there was nothing wrong and not to come back… I fell into a very deep depression. My dream was to be a normal teenager again. I ended up inpatient at the pediatric psychiatric hospital at 16 years old because nobody believed me, including you, and I didn’t want to live my life like that. The nurse at the hospital knew it was POTS after describing my symptoms right away… my heart sank when you were the cardiologist waiting in my psych room to evaluate me. You STILL didn’t believe me and even blamed ME for not making a follow up appointment when you specifically said, “do not come back because there is nothing wrong” (your exact words and I know that because they are engraved in my memory to this very day.) Did you really think that it would be helpful to blame a 16-year-old who was already in the psychiatric hospital? I hope you never treat another patient like you treated me.

Dear High School English Teacher – In high school, when I wrote an essay about my invisible illness and depression, you told me nobody really cares. I used that same essay when I applied for a scholarship aimed towards students with disabilities. I proceeded to earn $5,000 for college because I wrote about my disability and experiences. Guess what, people did care and were actually inspired! I even got to go to a banquet and speak when accepting my scholarship. I hope you never underestimate the power of another student with a disability. Please just remember that you never know what that student is going through. You taught me many life lessons through this experience though, and I thank you for that!

Dear High School Gym Teacher – You were a very passionate gym teacher, but when I told you I was feeling lightheaded and had severe chest pains… you told me to keep participating. Just because I didn’t have a diagnosis, you thought I was just trying to get out of gym class. Why didn’t you believe me? I really wanted to be like every other kid. I wanted more than anything to participate, but my health wouldn’t allow me. You made me feel like my symptoms were all in my head. Well, it’s many years later and I finally have a definite diagnosis. I hope you learn to believe your students when they tell you they have real medical problems that could make it dangerous for them to engage in gym class. Please remember, some students have disabilities that are considered invisible illnesses which means that you may not be able to psychically see that they are sick.

Dear ER Doctor I saw the first night I passed out – No, fainting is not a normal teenage girl thing. I want to know why you didn’t run any tests or give me fluids when I came to you after passing out for the first time in my life. I might have been saved from years of suffering if you took my orthostatic vitals. I had chest pains and dizziness. Your answer… it’s normal for teenage girls. Really, because none of my friends have chest pains, dizziness, fainting, etc.?

Dear Family and Friends – I appreciate your support and I love you dearly, but it is time for you to stop telling me to look on the bright side or it could be worse! It’s very hurtful when you tell me to just try harder to stay out of the hospital because I am trying my very hardest. My hardest is never enough. I appreciate your concern, but you will send me flying off the rails if you tell me to drink more water one more time. I don’t know how many times I must tell you that I can’t drink because of my stomach pain and nausea. That is the reason why I get IV infusions multiple times a week. It feels like you are diminishing my pain and symptoms when you tell me that pain is all in your head… and that I control it. Really, because I would love for a migraine that is a 10 on the pain scale to just go away because I “thought” the pain away. There’s way more going on inside my body than you will ever know, so don’t give me medical advice that you googled. All I need from you is love and support, not advice and judgement.

Guest author Kalyn is 20 years old and living with postural orthostatic tachycardia syndrome. She hopes this will help inspire others to persevere as they fight for their own diagnosis. Kalyn enjoys spending her good days hiking and canoeing with her service dog by her side.

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Today, I turned 28, and next month I will mark 11 years of living with POTS (postural orthostatic tachycardia syndrome). Each year with POTS has brought different challenges, and I’ve grown to expect the unexpected. I’ve learned, as anyone with a chronic illness does, to endure and adapt. I prize these skills above all others because they enable me to live the fullest life possible while battling POTS. Despite my best efforts to soak up the good moments, and let the bad ones wash over me, I found 27 particularly trying.

Just before my 27th birthday, I was a passenger in a three-vehicle car accident. I sustained a concussion that triggered a POTS flare that sent my health spiraling to depths it had not been to in years. It stole from me the functionality I’d fought desperately to regain in the 10 years since developing POTS. I spent the first several months of 27 in acute recovery, and the rest of the year navigating exhausting ups and downs. In May, my doctor informed me that my autonomic system is the most reactive it has ever been since I was diagnosed in 2014, meaning my POTS is the worst it has ever been – even worse than when I was using a wheelchair. When people see me in public, or view posts on social media, I tend to appear functional. After being sick for more than a decade, I’ve gotten very good at presenting as “normal” while everything inside me is falling apart.

In the past, I have been vocal about my struggles with dysautonomia. I have used my story and my everyday experiences to convey to people the severity of this largely invisible illness that affects 1-3 million Americans. But this past year, I have found myself quiet as I reckoned with my evolving relationship with POTS and the fresh wounds it has created. 27 challenged my optimism and my strength. But I have hope that 28 will be different.

Why do I have hope? Because while I’ve been fighting my personal battle with POTS, the growing army of dysautonomia warriors has been fighting for me and for millions of others. This year has been the biggest yet for the movement, as we’ve made leaps forward in terms of visibility, awareness, and research. In December, Solange Knowles came out as having a form of dysautonomia. This spring, Tori Foles and her husband Nick Foles, Super Bowl MVP, joined the POTS movement – partnering with Dysautonomia International to push for increased fundraising and awareness. After Dysautonomia International organized the first Congressional Briefing on POTS, Congress, for the first time, directed the National Institutes of Health to “stimulate the field” of POTS research as part of the FY 2018 Omnibus Bill. And Dysautonomia International funded over $400,000 in POTS research studies this year, with many more studies in the pipeline.

This progress is humbling, but equally humbling is the enormity of the work in front of us. There are incredible doctors out there – like my own, Dr. Brent Goodman at the Mayo Clinic – who are educating their peers and conducting research to better the lives of those with dysautonomia. As of now, POTS remains a chronic illness with very few effective treatments and no cure. But it is within our power to find a cure – we simply need to continue funding research. Currently, more doctors are requesting funding for research than we have money to give.

That is why I’m asking all of you to help me mark my 28th birthday by signing up to walk in or donating to the 2018 Boston POTS Walk with Team Hanna G and Me,  or by creating your own team or donating at POTSwalk.org. All funds raised go directly to Dysautonomia International’s POTS Research Fund.

Here’s to another year of fighting to beat POTS! 

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Philadelphia Eagles quarterback Nick Foles will run the legendary “Philly Special” play that helped win the Super Bowl with the lucky winner of an Omaze charity raffle. The raffle winner will get to bring a guest, and will receive VIP tickets to an upcoming Eagles home game, flights to Philadelphia, and lodging in a 4-star hotel.

All proceeds from the raffle will benefit Dysautonomia International’s POTS Research Fund. Nick’s wife, Tori, has been diagnosed with postural orthostatic tachycardia syndrome (POTS), a common form of dysautonomia that impacts an estimated 1-3 million Americans.

“You. Me. The Philly Special.” Let’s Do It!” reads a sign Nick held to kick off the raffle.

Omaze offers the chance to win a once-in-a-lifetime experience for as little as $10 – raising funds for worthy causes in a unique way. The more money you donate to the cause through the Omaze campaign, the more chances you have to win!

The deadline to enter the Omaze charity raffle is Sept. 21, 2018 at 11:59 p.m. PST. The winner will be announced on October 1, 2018.

In addition to the Omaze raffle funds, Nick is also donating all of the profits from his new book “Believe It: My Journey of Success, Failure and Overcoming the Odds” to causes that are special to his family, including Dysautonomia International and several faith-based organizations. The book, which recently reached No. 2 on the New York Times non-fiction Bestsellers List, discusses Tori’s POTS journey, among many other topics.

“We’re blessed that we have this chance to help raise awareness about POTS and dysautonomia and to contribute to very badly-needed research,” said Nick. “We want the proceeds to go to places we are a part of, and where our hearts lead us.”

Dysautonomia International created the POTS Research Fund in December 2013 to provide a dedicated stream of funding for POTS research. To date, the organization has issued nearly $1 million in cutting-edge POTS research grants seeking to identify more effective treatments, and eventually a cure.

To win a chance to run the Philly Special with Nick Foles, visit Omaze.com/philly.

To donate directly to the POTS Research Fund, visit CurePOTS.org.

Here why Nick & Tori think it’s so important to raise awareness about POTS and other forms of dysautonomia.

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Imagine waking up one day, and everything being ripped out from under you.

In a blink of an eye everything changes. Everything you love to do suddenly you can’t do anymore.

Scared, worried, unheard… misunderstood. Doctors clueless as to what is wrong.

Anxiety rising high, as that is the only diagnosis I hear. Knowing that this is far from normal, and anxiety would be treatable and better to have but this… THIS monster is much bigger.

Tears shed as my heart beats faster and faster with every inch my body rises. Why is this happening? Am I crazy?

Dizzy, faint, lightheaded… my daily life as the people around me think I’m lazy, but if they only knew the struggle. The struggle to get up, to take a step, a shower even. The things I took for granted.

My children… asking why mommy cant do the things she used to. The innocence in their eyes, the empathy they try to show. My explanation feels useless, and I’m hurting because I’m not the mom I use to be. I’m sorry.

My family… being a burden to them is my constant guilt. How I feel is my daily talk. I feel alone. I am alone. No one can understand unless they go through it. Sympathizing just makes me angry, though it shouldn’t. How could someone without POTS even begin to get it?

Friends… let’s go out! I sit there and watch them have fun, as I’m downing water just to avoid fainting. I’m jealous and it’s wrong of me to be. I would never wish anyone this. I’m sad because I’m the one sitting in the corner, wondering what I would be doing if this monster didn’t get me.

You don’t look sick… some things you just can’t see. You look perfect on the outside, but on the inside, there is a disaster. I’m in a constant battle with my heart. Every second, every hour, every minute of every day.

A doctor… a doctor that takes you by the hand and believes you… a miracle. The words, “yes, you have POTS.” The I knew it was more than anxiety, it was more then something simple.

The truth… there is no cure at this current time. There is medicine to help, but each person is different. The words you may need a wheelchair, a shower chair and medicine for life.

My mind… why did this happen to me? From pregnancy, Mono and maybe even my car wreck my doctor replied. What about my life? I’m only 22. POTS doesn’t discriminate.

My faith… dear God, what did I do to deserve this? Please take this away, please, I’m sorry.
A daily prayer to Him, wondering why and how this was in my plan.

A future… what now? How do I move forward being so sick? Pushing through for my family, for my babies. I’m their hero. I cant look weak. I have to be strong.

A story… to be continued.

Guest author Emily J. is 23 years-old and living with postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia. She hopes this will let others know they are not alone in feeling this way about living with dysautonomia.

Remember, you are never alone on this journey. Dysautonomia International offers support groups to help people impacted by dysautonomia connect with others who “get it.” Visit www.dysautonomiainternational.org/support to find a support group.

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Too exhausted to cook? Running low on spoons? (If you don’t know what we mean by low on spoons, check out the Spoon Theory.) Here are some meal ideas for inspiration from a fellow dysautonomia warrior.

People with dysautonomia have a lot of different dietary restrictions, so you can modify these ideas as needed. And of course, add copious of amounts of salt if your doctor has suggested a high salt diet to help manage your dysautonomia symptoms. You can find some salty diet tips here.

Leafy Green and Protein
Keeping your favorite green leafy vegetable and protein of choice on hand means you can easily throw together a salad on a low energy day. Spinach is my leafy green of choice. As for protein, my favorites are leftover pot roast, chicken breasts, tuna, or frozen veggie patties. I top it off with some hot sauce, barbeque sauce, Mexican spice blends, lemon juice, or oil and vinegar. Add whatever veggies or fruit you have on hand (berries, apple, avocado, onion, tomato, peppers, shredded carrots) and you’ve got yourself a nutritious, filling meal. Iceberg or butter lettuce with feta, kalmata olives,  some olive oil dressing, makes a super salty quick Greek salad.

Chopped Veggies
Keeping chopped vegetables ready to go in my fridge or freezer allows me to eat healthier than I otherwise would on symptomatic days. Bags of store bought or home chopped frozen vegetables make throwing together a stir-fry with whatever protein I have on hand quick and easy. I also sneak a little spinach into nearly everything I cook – not enough to change the flavor, but enough to count. If you don’t mind a green tint, you can even add a little raw spinach to your smoothie without changing the flavor!

Fruit
Whether it be fresh or frozen, you probably don’t need told that eating fruit is a healthy. Eat it alone. Add it to your salad, oatmeal, or use it as a waffle topping. Dip it in chocolate, marshmallow fluff, or peanut butter. Eat it as a frozen treat or freeze it to use in your smoothie instead of ice. The possibilities are endless. Be mindful that canned fruit often harbors a lot of unnecessary added sugar.

Deli Meat
If you have a daily sodium goal, deli meats can help you meet it. The standardized reference for 4 slices of deli ham in the USDA database is listed as 491mg of sodium per 4 slices of ham. If you are aiming to consume 5 grams of salt (1965 grams sodium) per day, 4 slices of ham gets you 25% of the way there. If you aren’t in the mood for a sandwich, use it to make a lettuce wrap, roll up some slices of meat with some cheese, or put it in an omelet.

Eggs
As someone who could not eat egg for several years, I am in awe of all the easy meal options available to me thanks to eggs! If you Google “minute muffins” you will find hundreds of variations of a muffin you make in your microwave using eggs, a fat, a flour, and whatever extras (fruit, chocolate, sausage) tickle your fancy. You can make an egg sandwich, an omelet, or scramble them with cheese. Cracking an egg on a tortilla and successfully flipping it over without breaking the yolk (here is a recipe) makes me feel like a kitchen ninja, and sometimes is just the pick me up I need on a symptomatic day.

Noodles and Sauce
Not only is this a simple meal to throw together on a low energy day, it is easy to stay stocked up on your favorite jarred sauce and noodles, rice, or quinoa since they have a long shelf-life. Simply follow the directions on the box of noodles, add some butter or your sauce, and you are in business! If you are feeling ambitious, add some meat or veggies. My go to is stirring in cherry tomatoes and a few handfuls of torn up fresh spinach after adding the sauce to the noodles, then heating until the spinach is wilted.

Nut Butters
Whether you enjoy the distinctive taste of peanut butter or the milder flavor of almond butter, there is so much you can do with nut butter. Make a sandwich. Put it on a tortilla and microwave it for 30 seconds. Throw a dollop of it into a smoothie or your oatmeal to make it more satiating. Spread it onto some crackers, celery, or a banana. Use it as a dip for apple slices or pretzels. Heat it up with some soy sauce or tamari to make an Asian style sauce for noodles, snap peas, chicken or shrimp.

Hummus
We all know and love hummus for dipping pita chips into, but don’t stop there! Use it as a dip for cucumbers, celery, bell peppers, celery, or carrots. Spread it on some toast. Use it in place of mayonnaise or mustard on a sandwich to add flavor while also adding nutrients thanks to the garbanzo beans and sesame seeds used to make hummus.

Potatoes
On a low spoon day, check out your fridge for leftovers you could turn into potato toppings. Whether we are talking plain old Idaho potatoes or sweet potatoes, they are easily cooked in the microwave and are an excellent base to pile toppings onto. Popular toppings are meats (chopped ham, crumbled bacon, taco meat, chili, stew), vegetables (onions, beans, tomatoes, avocado, sautéed mushrooms, sautéed spinach), cheese, sour cream or plain greek yogurt seasoned with salt, herbs/seasonings (basil, dill, chives, chili powder) and “sauces” (salsa, cheese sauce, alfredo, pesto). If are in the mood for something sweet, top a sweet potato with chocolate, marshmallow, nut butter, cinnamon sugar, or fresh fruit like bananas or pineapple.

Yogurt & Kefir
You can eat yogurt on its own, or topped with raw fruit, fruit preserves, nuts or cacao nibs. Plain Greek yogurt is versatile – blend it into a smoothie with frozen fruit, top your potatoes with it, use it as a sour cream replacement on tacos or tortillas, use it as a base for a dip (just add salt and dill) or even use it as a sauce for chicken with some curry powder for a “too tired to cook” version of tandoori chicken.

Instant Oatmeal
When you are too tired to cook but you want a hot meal, instant oatmeal is a good option. If you have a little energy, stir cinnamon and chopped apple or raisins into your oatmeal before microwaving it. You can add a little protein to your by microwaving it with milk instead of water, or by adding almonds or walnuts.

Leftovers!
When you do have the energy to cook, or someone is kind enough to cook for you, always try to cook enough to get another meal or two out of whatever you’re making, then you can just microwave the leftovers. Miscellaneous leftovers that aren’t enough for a full meal often make great filling for quesadillas or omelets, and don’t be afraid to eat breakfast for dinner!

Chocolate Chips
This list wouldn’t be complete without something to nourish your sweet tooth. Throw some chocolate chips in your yogurt, smoothie, or trail mix blend. Spread melted chocolate chips on your toast with butter or peanut butter. Use melted chocolate chips to coat nuts or as a dip for fruit or pretzels.

My favorite way to eat chocolate chips right now is by melting them in a small dish in the microwave, stirring in frozen blueberries, and eating them with a fork. The chocolate hardens quickly when it comes into contact with the frozen blueberries, and you have chocolate covered blueberries! Adding a little coconut oil before microwaving will make your chocolate softer and less likely to stick to the dish.

If you are looking for a healthier option that still gives you a crunchy chocolate taste, try cacao nibs. They are great in yogurt, sprinkled on ice cream, or mixed in with salted nuts.

Guest author Jaclyn is a blogger and member of Dysautonomia International’s Patient Advisory Board. She is a lover of science, empowering other patients with information, and approaching life with a sense of humor.

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It’s easy to be intimidated by healthcare professionals. We see them for roughly 10-15 minutes at a time and often after a period of several months. Even after several months, it can feel like doctors have had little time to review our cases. Medical records are sometimes left incomplete, inconclusive, or even inaccurate. Inaccuracies can be frustrating and problematic, but they can also be corrected. Many people do not realize that they have the legal right to change medical or billing information. Exercising this right not only benefits patients, but practitioners as well.

In 1996, Congress signed into law the Healthcare Insurance Portability and Accountability Act (HIPPA). One of the Act’s principle goals was to “combat waste, fraud and abuse in health insurance and healthcare delivery.” Over the next decade, HIPPA expanded to include numerous patient protections. In 2003, the US Department of Health and Human Services (HHS) initiated the first HIPAA Privacy and Security Rules. The Privacy Rule was intended to give patients improved access to their health data.

Underneath the umbrella of Privacy Rule protections is a patient’s right to change incorrect or incomplete data. Increasingly, the medical field has acknowledged that a patient’s access to their personal health data is not only their right but is also vital to improving the quality of doctor-patient relations and treatment.

The Privacy Rule provides you with the right to inspect, review, and receive a copy of your medical and billing records. If you believe that information in your record is incorrect, you can request a change to your record. Changes must be limited to factual statements. Examples of factual statements include:

• Medical test results
• Phone number
• Name of diagnosis
• Length of appointment

A statement such as “patient appears lethargic” cannot be changed because it is the observation of the doctor rather than fact.

The HIPAA Privacy Rule generally applies to “covered entities” or providers who transmit health information in electronic form i.e. hospitals, doctors, and insurance plans. They may require in advance that you include a reason for your request and that it be in writing. Your provider must act on your request for an amendment no later than 60 days after receipt but may extend by 30 days if a reason for the delay is provided in writing. If your provider does not provide a reason, they must amend the inaccurate or incomplete information. There are a few exceptions. The entity may deny the request if the information:

• Was not created by the provider, unless the individual provides a reasonable basis to believe that the originator of protected health information is no longer available to act on the requested amendment;
• Is not part of the record;
• Would not be available for inspection under 164.524; or is accurate and complete.

Many health facilities provide forms for amendments, such as this form from Cleveland Clinic. However, sending your own written request is also acceptable. A sample of a request could be:

June 30, 2018

Dr. John Smith
123 Smith Street
Smithville, NY 12345

Re: Request to Amend Medical Records;  Patient Name: Jane Jones; D/O/B: 3/15/1985

Dear Dr. Smith:

Pursuant to Title 45 of the Code of Federal Regulations § 164.526, I am requesting an amendment to my medical record.  

The reason for this amendment request is that the report, written by Dr. Smith, on 12/6/18, incorrectly states that I have Type O blood. This is inaccurate. I am requesting that the record be amended to state that I have Type B blood.

Please let me know when this correction has been made in my file.

Thank you,

(signature)

Jane Jones
312-456-7890

If the provider still does not agree to your request, it is your right to submit a “statement of disagreement” that the they must add to your record. Your provider may reasonably limit the length of the statement and also provide a rebuttal statement. Once the amendment or statement of agreement is filed, the provider or plan must make reasonable efforts to inform individuals who have access to the protected information and may rely on it for future reference.

For the complete law, see Title 45 of the Code of Federal Regulations § 164.526.

Guest blogger Rachel Partington is a lawyer living in Rochester, NY. In her spare time, she writes on health and disability, and also runs a support group – Chronic Illness in Young Adults (CIYA). She also teaches Vinyasa Flow Yoga. She has autoimmune hearing loss and POTS.

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Philadelphia Eagles quarterback and Super Bowl LII MVP Nick Foles is speaking up about his wife Tori’s POTS diagnosis in his new book, Believe It: My Journey of Success, Failure and Overcoming the Odds, which went on sale today. Nick kicked off his book tour with an appearance on “Good Morning America.”

Tori and Nick joined Dysautonomia International at our 6^th Annual Conference in Nashville last weekend to share their story, and let others know why it’s so important to raise awareness.  They are donating a portion of the book proceeds to Dysautonomia International’s POTS Research Fund (www.CurePOTS.org) as described in an earlier blog post. They have also made a personal donation to Dysautonomia International to fund research, physician education, public awareness and patient empowerment programs. We are very grateful for their support!

Here’s an excerpt from Believe It that discusses Tori’s journey with POTS, courtesy of publisher Tyndale Momentum:

While I was in Philly fighting for a starting position, out in Oregon, Tori was facing her own battle. A few weeks earlier, she had been at an outdoor picnic concert hanging out with some girlfriends when she suddenly started feeling light-headed. When her symptoms worsened to the point that she started missing work, she decided to see a doctor.

Because she presented with no fever, and her symptoms (dizziness, nausea, fatigue, and some insomnia) were largely invisible, the doctor diagnosed her with depression. That didn’t sit well with Tori, so she decided to see another doctor. He said the same thing. So did the next doctor. And the one after that.

By this time Tori was really starting to get frustrated.

“I don’t think this is the right diagnosis, Nick.” She was close to tears when she called me. “I know something’s wrong. I was a college athlete. I exercise every day. I know my body. But nobody will listen to me.”

I felt so helpless. I agreed that Tori wasn’t depressed. She was one of the most upbeat, confident women I’d ever met. But clearly something was going on. She felt sick all the time. She became too weak to exercise. She was having heart palpitations and blinding headaches, and she couldn’t keep anything down. Talk about irony—there I was, in peak physical condition yet getting a full battery of medical tests every day, while my girlfriend was struggling just to stand up without feeling faint, and she couldn’t even convince anyone she was sick…

***

The one silver lining of an otherwise miserable week was that my mom and Tori had both flown to Philadelphia. It was the first time I’d seen Tori in months, but as wonderful as it was to be together, it was hard to see what a toll her illness had taken on her.

The good news was that she finally had a name for what was making her sick: postural orthostatic tachycardia syndrome, or POTS.

***

Tori had to constantly monitor how she felt, drink lots of fluids, and increase her sodium intake to keep everything stable. This was all very unexpected, given that a few months before, she’d been perfectly healthy and running more than fifteen miles a week. The doctors still didn’t know what was causing this, though one of her blood panels also came back positive for Lyme disease, and in many cases the two conditions are linked.

Beyond the struggle of the symptoms themselves, it was hard to deal with a condition that is often misdiagnosed and misunderstood. There is currently no cure, and most of the treatment options are still in the experimental stage. Even with medication, her symptoms escalated to the point that she had to leave her job at Nike and move back home with her parents in Wisconsin. It pained her to give up that job, but it was just too much for her to continue living by herself when she needed to focus on getting healthy again.

She put on a brave face when she was in Philly, but I could tell she was struggling. As miserable as I felt, she’d been dealing with even worse symptoms—and for a whole lot longer. Still, I was grateful to have her close by, and I was glad neither of us had to deal with these health setbacks alone.

For more information on Believe It, co-authored by Joshua Cooley, including book tour dates, visit www.nickfolesbook.com.

To view the panel discussion with Tori and Nick Foles recorded during Dysautonomia International’s 6^th Annual Conference, visit our Autonomic Disorders Video Library.

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