Early Sjögren’s Antibodies in Dysautonomia Patients

April is Sjögren’s syndrome awareness month.  Since Sjögren’s (pronounced SHOWgrins) is the second most common cause of autonomic neuropathy, Dysautonomia International will be posting Sjögren’s/dysautonomia related info this month on social media, starting with this blog post.

Dysautonomia International President Lauren Stiles was diagnosed with POTS and Sjögren’s syndrome in her early 30s, younger than the typical Sjögren’s patient. She co-authored a research study on Sjögren’s syndrome related antibodies in dysautonomia patients that was presented at the 2016 American Academy of Neurology annual meeting. The study found that 41% of idiopathic dysautonomia patients who reported either dry eyes or dry mouth had antibodies that are found in the early stages of Sjögren’s syndrome.

Dysautonomia Dispatch Blog Editor Emily Deaton interviewed Lauren to answer some of the questions we received after we shared the initial abstract.

Screen Shot 2016-04-18 at 2.36.20 PMAutoimmunity & Autonomic Impairment: Preliminary Characterization of a Clinical Syndrome with Sjögren’s Features Associated with Novel Organ Specific Antibodies.

Q: Can you explain this study in plain English?
A: Sure. Dysautonomia International collaborated with the neurologists at South Shore Neurologic Associates in New York and Sjögren’s researchers at SUNY Buffalo.  We looked at the records of all of South Shore Neurologic Associates’ patients over the past year who reported either dry eye or dry mouth symptoms, plus some kind of other autonomic problem, who didn’t have an identifiable cause (meaning their dysautonomia was “idiopathic”), and who didn’t have the SS-A and SS-B antibodies doctors common rely upon to diagnose Sjögren’s.  Out of 95 idiopathic dysautonomia patients included the study, we found that 41% of them had one or more  novel early Sjögren’s antibodies (salivary protein-1 [SP-1], parotid secretory protein [PSP], and/or carbonic anhydrase-6 [CA-6]). Then we looked at the symptoms found in the antibody positive patents compared to the symptoms in the antibody negative patients.  They essentially had the same symptom profiles, but the antibody positive patients were more likely to have constipation.

Q: What type of dysautonomia did the patients in this study have?
A: Rather than focusing on the formal diagnostic criteria used to classify the different types of dysautonomia, we focused on the symptom presentation.  We looked at symptoms suggesting autonomic dysfunction: orthostatic intolerance, bladder dysfunction, secretory dysfunction (dry eyes/dry mouth), and gastrointestinal dysfunction. The study included individuals who had previously been diagnosed with postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, neurocardiogenic syncope, orthostatic hypotension, orthostatic intolerance, and gastroparesis, which are all forms of dysautonomia. Sjögren’s is the second most common cause of autonomic neuropathy, after diabetes, so it’s not surprising that we would see a wide variety of dysautonomia patients who have markers associated with Sjögren’s syndrome.

Some of the study subjects had also been diagnosed with Ehlers-Danlos syndrome, mast cell activation syndrome, chronic fatigue syndrome, fibromyalgia, Lyme disease, and other overlapping conditions seen in our patient community.

Q: Do these antibodies cause dysautonomia?
A: The antibodies involved in this study (SP-1, PSP and/or CA-6) are targeting the salivary glands, so they may be causing or contributing to dry mouth, but we don’t think they are causing all of the other aspects of dysautonomia in these patients.  These antibodies have been identified early in the course of Sjögren’s syndrome in two mouse models of Sjögren’s and in humans.  Sjögren’s comes with a lot of different antibodies, so there are likely other antibodies or immune markers in these patients that are disrupting the autonomic nerves, resulting in dysautonomia symptoms.

One likely culprit is muscarinic-3 receptor antibodies, which have been found in up to 90% of Sjögren’s patients in other studies, particularly Sjögren’s patients who are younger or earlier in the course of the disease.  Muscarinic-3 (M3) receptors are part of the autonomic nervous system.  When an M3 antibody binds to these receptors, this can impair the messages sent between the autonomic nerves, resulting in symptoms of dysautonomia. Unfortunately, reliable M3 antibody testing is not commercially available at this time. However, we are working on a study with Dr. Steven Vernino at UT Southwestern to look for these antibodies in POTS patients.

Q: How can patients get tested for these antibodies?

A: If you have any symptoms of dry eyes or dry mouth, you can ask your doctor to test you for the early Sjögren’s antibodies. Your doctors may not have heard about these antibodies, but you can show them this website about the panel. The panel includes the early Sjögren’s antibodies (SP-1, CA-6 and PSP), with an option to include commonly tested Sjögren’s antibodies (SS-A, SS-B, ANA, RF). Your insurance company may cover the test. Most doctors will not diagnose Sjögren’s based on the early Sjögren’s antibodies alone, but they may be helpful in making a diagnosis in patients who present with symptoms of Sjögren’s (dryness, neuropathy, dysautonomia, fatigue, joint pain, etc.) in light of other Sjögren’s tests results too.

Q: Is Sjögren’s common in dysautonomia patients?

A: Sjögren’s is the second most common cause of autonomic neuropathy, after diabetes, and has been associated with postural orthostatic tachycardia syndrome, orthostatic hypotension, orthostatic intolerance, autoimmune autonomic ganglionopathy, gastroparesis, and other forms of dysautonomia. In fact, the dry eye that Sjögren’s is well known for is a symptom of dysautonomia, since the tear glands are controlled by the autonomic nervous system. 1 in 10 people who have dry eye have Sjögren’s syndrome. Sjögren’s impacts 4 million Americans, but 3 million of them are undiagnosed.

Q: Isn’t Sjögren’s an older woman’s disease?
A: The stereotypical Sjögren’s patients is a Caucasian woman over age 40. However, Sjögren’s can occur in any race or ethnicity, and 10% of patients are male. While Sjögren’s is not as common in children as it is in adults, it can occur at any age. The youngest novel Sjögren’s antibody positive patient in our study was 13. Younger Sjögren’s patients tend to present with different symptoms than older patients, with more neurological symptoms and less dryness.  The dryness usually develops slowly over time as the disease progresses.

The current diagnostic criteria for Sjögren’s were developed based on studies of older patients who have advanced/severe dryness associated with their Sjögren’s. Many experts now agree that the current diagnostic criteria are not catching patients who are at an earlier stage of the disease, who tend to be younger and have less severe dryness, when you may actually be able to prevent some of the long term damage from occurring. People diagnosed with Sjögren’s in their 50s have probably been dealing with it for 20-30 years before they were “sick enough” to get diagnosed.

Q: Can you grow out of Sjögren’s?
A: Unfortunately, no.  There are a small percentage of patients who may go into remission, but for most patients Sjögren’s is a slowly progressive, systemic autoimmune disease.  Diagnosing and treating it as early as possible can help slow down the progression and can help avoid serious organ and neurological complications.

Q: Can Sjögren’s cause problems other than dysautonomia? 
A: Definitely.  Sjögren’s is one of those diseases where everyone can present with different symptoms.  Fatigue, muscle pain, and joint pain are very common amongst Sjögren’s patients. Some patients have a limited disease that primarily impacts their exocrine glands (tear, salivary, and other moisture producing glands throughout the body).  But most patients develop one or more extra-glandular complications, such as vasculitis, interstitial lung disease, renal tubular acidosis, atrophic gastritis, liver disease, gall bladder disease, pancreatitis, or neuropathy. Sjögren’s can attack any part of the nervous system, from the brain to the small fiber nerves in your skin.  About 50% of Sjögren’s patients have a second autoimmune disease, most commonly rheumatoid arthritis, lupus or Hashimoto’s thyroiditis.

Q: Some doctors say it’s not worth it to test for Sjögren’s, because there are no treatments. Is that true?
A:  Arrgh, no!  A lot of doctors don’t really know anything about Sjögren’s (just like dysautonomia), so they may assume it’s just a “dry eyes and dry mouth” problem that can be easily treated with eye drops and mouthwash.  This is completely false.  Sjögren’s is a progressive, systemic autoimmune disease.  It’s essential to get diagnosed and treated as soon as possible to prevent long-term complications.  Sjögren’s comes with a 44-fold increased risk of lymphoma, doubled risk of heart attacks, increased risk of stroke, increased risk of fetal heart block, dental decay, corneal damage, organ damage, and a really terrible quality-of-life if left untreated.  You deserve to know if you have it or not, so that you can obtain proper medical care.  Your family also deserves to know, because autoimmune diseases often run in families.  If you have dry eyes or dry mouth that is not due to medication (many medications cause dry mouth), plus dysautonomia symptoms, and your doctor won’t help you get tested you for Sjögren’s, find a better doctor. 
Many of the autonomic neurologists listed on Dysautonomia International’s physician listing know how to screen a patient for Sjögren’s.  Another way to find a good Sjögren’s doctor is by contacting the closest chapter of the Sjögren’s Syndrome Foundation, and asking them who the best doctors are to diagnose Sjögren’s in your area. Keep in mind that most Sjögren’s doctors are rheumatologists, and they generally don’t deal with the neurological aspects of Sjögren’s, like dysautonomia.

 

Q: What are the treatments if I have Sjögren’s?
A: While there is no cure for Sjögren’s, there are many treatments available to minimize symptoms and reduce the risk of complications. Pharmacological treatments include lubricating, autologous serum, or cyclosporine eye drops, punctal plugs, lubricating mouth washes, mouth rinses to help remineralize teeth, pilocarpine, cevimeline, hydroxychloroquine, and in more severe cases, immune modulating treatments like high dose steroids, intravenous immunoglobulin, mycophenolate, or rituximab. There are several new immune modulating treatments being explored. Treatment is very individualized and most pharmacological treatments are not FDA approved specifically for Sjögren’s. Lifestyle measures, like using humidifiers, consuming an anti-inflammatory diet, regular exercise, stress management, and proper sleep, also play an important role in the management of Sjögren’s.


Q: Why do you talk about Sjögren’s so much?
A: Good question!  I do talk about it a lot because that’s the root cause of my dysautonomia and alphabet soup of other diagnoses, and I want to make sure patients are getting properly screened for it.  Sjögren’s is a common cause of dysautonomia, but it’s treatable in a way that is completely different than how we treat most other causes of dysautonomia. And if you have Sjögren’s, but remain undiagnosed and untreated, your chances of getting better are slim. Sjögren’s rarely improves on its own.  It’s slowly progressive, so it’s critical to be diagnosed as soon as possible if you have it. 
Given the known overlap between Sjögren’s and dysautonomia, I suspect there are many undiagnosed Sjögren’s patients within the dysautonomia community.  This study confirms that suspicion – 41% of idiopathic dysautonomia patients with dryness is a lot of people!  Just like dysautonomia patients, Sjögren’s patients experience significant diagnostic delays due to a lack of public and physician awareness.  The Sjögren’s Syndrome Foundation has set a goal of reducing the average diagnostic delay in Sjögren’s from 4.7 years to 2 years in the next five years. Anything I can do to help dysautonomia patients who may have undiagnosed Sjögren’s “find their root cause,” I’m happy to help.

I am very interested in other causes of dysautonomia too, because we need to understand all of the root causes to be effective advocates for our patient community.  One of the things we’ve been able to do with Dysautonomia International is identify patients who have expertise in their own diagnoses (EDS, MCAS, Lyme, Chiari, Sjögren’s, lupus, celiac, antiphospholipid syndrome, CRPS, gastroparesis, etc.) and engage them in research and physician education – because we need the researchers and physicians to understand all of these things and figure out how they are related, or not related.  We won’t be satisfied until we’ve found everyone’s root cause, more effective treatments, and a cure for all of us.

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The Affordable Care Act & Insurance Issues in the Dysautonomia Community

As Washington politicians continue to play political football with healthcare, Americans find themselves struggling to know what’s going on and what will happen to our healthcare system in the near future.

While we are strictly a non-partisan organization, and it’s difficult to discuss health care policy and the Affordable Care Act (also known as “Obamacare”) without seeming to take sides, we thought this would be an important issue to discuss with our patient community.  We wanted to know how dysautonomia patients and caregivers felt about this important issue, so we conducted a survey to ask patients and caregivers about their perspectives.

In January 2017, we prepared a politically-neutral survey to gather input from dysautonomia patients and caregivers around the US on their feelings and experiences related to insurance coverage and the Affordable Care Act. The survey was brief so that we could analyze the data quickly, and it certainly doesn’t capture the full scope of this very complex issue.  We present a summary of the results below so readers can make up their own minds.

Whatever your perspective, we encourage dysautonomia patients and families to use this information and contact their federal representatives to have their voices heard. You can find contact info for your federal representatives on our Elected Officials Look Up tool. You may be one voice in a sea of many, but Congressional offices keep track of how many constituents contact them on each issue, and what positions you share.  Calling and emailing your Congressional members are the most effective way to communicate. Postal mail may take weeks to arrive because it goes through intense security scrutiny before being delivered to Congress. Requesting a meeting with the local office of your elected officials may help too. Ask to meet with the office staffer who is most directly involved with health policy matters.

Dysautonomia International has been the voice of the dysautonomia community on Capitol Hill since our first Dysautonomia Lobby Day in 2013, bringing hundreds of families to Capitol Hill to meet with their House and Senate members.  We’ve engaged Congress and federal agencies on issues ranging from increased research funding for autonomic disorders, to the approval of drugs that help dysautonomia patients, to providing insurance coverage for autonomic testing. You can read our other federal policy and advocacy positions here.


Survey Title:  The Affordable Care Act & Insurance Coverage in the Dysautonomia Community

Survey Design: Politically-neutral questions regarding insurance matters were asked using Survey Monkey, a web based survey data collection tool. The survey was distributed through Dysautonomia International’s email list, social media channels, and patient support groups. Survey participants were instructed that the survey was meant for US citizens and residents. There were no age or other limitations on survey participation. Within the first 48 hours after its release, 339 individuals participated in the survey, and their answers form the basis for this summary. Participants were not required to provide their name or other personally identifiable information, although the final question of the survey permitted them to do so if they wanted to. Basic statistical analysis was performed in Microsoft Excel.

Summary of Survey Results:
US Citizenship or Residency
Of the 339 participants, 337 responded affirmatively that they were US resident or citizen and 2 individuals did not answer the question.

Relationship to Dysautonomia
62% of respondents were dysautonomia patients, 29% were caregivers for a dysautonomia patients, 8% were both a dysautonomia patient and caregiver, and one individual reported “none of the above.”

Access to Insurance
98% of respondents had insurance at the time of the survey.

Source of Insurance
Insurance was provided by the following sources. Respondents were allowed to chose more than one option, since some people have insurance from multiple sources.
Spouse’s Employer: 31.70%
Respondent’s Employer: 20.26%
Self-Funded: 17.97%
Parent’s Employer: 12.42%
Federal Government: 11.76%
State Government: 11.73%
Union: 0.65%
Local Government: 0.33%
Other: 7.84% (“other” answers included university sponsored insurance, COBRA, living overseas with travel insurance, etc.)

Since our patient community includes adolescent and college-aged students, we asked whether respondents were on their own insurance plan or a parent’s plan. 81% of respondents were on their own plan and 19% were on a parent’s plan.

Household Income
Respondents report an average household income of $86,990. The median household income in the US was $55,775 in 2015.

This finding is consistent with prior studies identifying higher than average median household income in POTS families. This may reflect the difficulty in getting diagnosed with POTS. Individuals from lower income families may have a harder time obtaining a diagnosis, as the average POTS patients sees 7 doctors before being diagnosed with POTS, and 25% of POTS patients see more than 10 doctors before being diagnosed with POTS. Lower income individuals may not have the financial means to see 7-10 doctors or more, and may thus remain undiagnosed.

Monthly Health Insurance Premiums
Respondents contribute an average of $447 per month towards their health insurance premium.

Opinion on the Affordable Care Act
25% of respondents thought that the Affordable Care Act should be kept as is, 56% felt that it should be amended to change certain parts, and 19% felt that it should be repealed entirely.

Pre-Existing Health Condition Denials of Coverage
23% of respondents had been denied insurance coverage due to a pre-existing health condition prior to the adoption of the Affordable Care Act, which prohibits insurers from denying coverage based on pre-existing conditions.

Affordability of Health Insurance Coverage
22% of respondents were unable to afford health insurance prior to the adoption of the Affordable Care Act.

28% of respondents said the Affordable Care Act allowed them to purchase health insurance for themselves or a dependent that they would not have been able to afford otherwise.

Impact of the Affordable Care Act on Dysautonomia Patients and Their Immediate Families
45% of respondents felt that the Affordable Care Act benefitted them personally, 16% felt it didn’t impact them at all, 25% felt that it harmed them and 15% weren’t sure. The reasons given varied widely, from allowing a respondent or respondent’s family to have insurance for the first time, to concerns about higher co-pays. One of the most frequent benefits reported was the ability of young people with POTS to stay on their parent’s plan until age 26. One of the most frequent complaints reported was increased health care costs.

40% of respondents felt that the Affordable Care Act benefitted members of their immediate family, 20% felt that it didn’t impact members of their immediate family, 24% reported that it harmed members of their immediate family, and 16% weren’t sure. Reasons given varied widely, but were similar to the reasons given in the prior question.  Many individuals felt that it benefitted their family members by providing health insurance for the first time or allowing children to stay on a parent’s plan until age 26, while many others expressed concern about higher overall health care costs.

Anticipated Impact of Repeal
52% of respondents felt that repeal of the Affordable Care Act would impact them negatively, 8% felt that it wouldn’t impact them at all, 13% felt that it would impact them positively, and 27% weren’t sure.

Political Leanings
42% of respondents tend to identify politically as Democrat, 27% report no party affiliation, 20% tend to identify as Republican, 7% prefer not to say, and 6% tend to identify with a third party.

Conclusion:
The overall picture is complex, with a diversity of experiences and perspectives within our patient community. The data suggests that the Affordable Care Act has benefited more dysautonomia patients and their families than it has harmed. A majority of individuals who responded to this survey felt that a repeal of the Affordable Care Act would impact them negatively (52%), and an even larger majority felt that it should remain as is or be amended (25% and 56%, respectively). The most common concern raised by those who felt they did not benefit from or did not favor the Affordable Care Act was increased health care costs.

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The Dreaded Question: “How are you?”

It’s such a benign question, and probably something you hear several times a week… “how are you?”  The standard and somewhat expected answer is “I’m fine.”  But when you live with a a form of dysautonomia or any chronic illness, you may dread answering this question.

If you answer truthfully, revealing the litany of symptoms you are dealing with at that moment, some people may interpret this as whining or being negative.  “I’m so lightheaded I can’t stand up without losing my vision to a field of grey, I’ve puked twice today, I’ve had a migraine for four days and the pharmacy ran out of my beta-blocker so my heart rate is hovering around 135.”  Speaking the truth about how you are really feeling rarely goes over well, unless you have very understanding friends and family.

If you give the standard “I’m fine” response, this creates expectations that you may not be able to live up to.  Maybe you can’t go Vegas with your college friends this weekend, because you really aren’t “fine.”  If you say “I’m fine,” people may assume you’ve recovered from your illness, because they haven’t grasped the concept of “chronic” illness.

Given how complicated this simple question can be, we asked patients how they deal with the “how are you?” question. Humor and vagueness seem to be popular choices.

“Hanging in there.”
“I’m not dead yet!” in your best Monty Python voice.
“Cured! Just kidding.”
“Meh.”
“No comment.”
“Today is a good day.”
“Good days, bad days.”
“Some days are better than others.”
“The same, but staying positive.”
“Do you want the real answer, or the polite answer?”
“Don’t ask, don’t tell.”
“Same —-, different day!”
“Blessed to be here, but I still feel like —-.”
Ignore the question and ask them how they are doing.
Say “how you doing?” like Joey from friends.  Crack a joke and avoid answering!

However you chose to respond, just be thankful that someone cares enough to ask you!

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Top 10 Tips for College Students with Dysautonomia

Dysautonomia International asked our community to give us their best tips for college students with dysautonomia.  Here are the top 10 tips.

1“We’ve learned for my daughter with POTS, no early morning classes to give her time to “get going.” We also met with Student Disability Services at her college– they were so helpful! She’s been able to use a Live Scribe pen that records the lectures as she writes to be able to reference back to the class at the times “brain fog” kicked-in. Her classes are also spaced apart so she doesn’t have to rush so much from one class to another. She’s also able to have water and Gatorade with her in class. We’ve learned a lot together through it all!” -Caryn Williams

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2  “Talking to your teachers at the beginning of the quarter/semester is a must in my opinion. I always showed up in their office the first week of classes. I would made copies of my doctors’ notes for them and offer it to them. Some took it, and some didn’t. I would briefly explain my condition and allow them to ask questions if they wanted. If I was having trouble finishing a paper on time due to brain fog or a bad flare up I would email my teachers and let them know before the paper was due. 95% of the time the teachers would volunteer to let me turn in it late, or make some other arrangements for me. It’s also really helpful if you can make friends in each class and exchange info that way they can let you know what you missed if you aren’t able to be there.” -Heather Applebury

3“I found that if I study whenever I could and never crammed. I could always get enough sleep. I graduated Magna Cum Laude in Physics. Brain fog isn’t impossible!” -Lorin Bales

 

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4“Let go of expectations. It’s impossible to do all of the things people expect of you and all of the things you expect of yourself without becoming completely exhausted. Going through college with POTS is hard, and it’s ok if you can’t do everything. Don’t feel bad if you need to miss class, can’t go out with friends, or even have to take some time off. Chances are, you’re still doing a great job.” -Rachel Leeds

5 “Always carry a giant water bottle and salty snacks with you.” -Emily Coday

 

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6

“I start all my assignments super early. That means even opening a word document and typing the header for a paper if I’m feeling absolutely terrible. It helps me gauge how much I have to do.” -Zack Orban


7
“Be careful about drinking alcohol — IF you have your mind made up that you are going to, drink at least 8oz of water for every alcoholic beverage.” -Maggie Clore

 

8

“Use a roll-around backpack for those heavy books and fluids.” -Lorin Bales

 

 

9“Seek support from your school’s counseling center. Navigating college with chronic illness can be quite draining at times, and it is very important to take care of your mental health. Access to the counseling center is included in your tuition, so it cannot hurt to check it out! Sometimes having someone to talk to can make all the difference.” -Cassidy Celeste

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10“Before the school year begins or as soon as the semester begins, meet with the campus health clinic staff to talk to them about dysautonomia or POTS. Let them know you may not need their help managing your dysautonomia or POTS, but if you do, you want to be sure they are familiar with the condition and comfortable providing the assistance you need. Give them contact info for your good dysautonomia doctor, if you have one, and give them some journal articles from Dysautonomia International’s website about your condition.” -Micha Freeland

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Dear Old Me

research-update-2Seven years ago this week, I woke up sick with acute dysautonomia symptoms. I had no idea what was going on with my body and it was rather terrifying. Life’s challenges teach us the greatest lessons, so I decided to write my 2010 self a letter sharing some of what I have learned so far.  -Lauren Stiles

Dear January 2, 2010 Me,

You went to sleep last night after a thrilling day of skiing and dancing until the wee hours of the morning, laughing to the point of exhaustion with good friends and loved ones. You had a nearly perfect day. But something terrible is about to happen. It won’t make sense to you at first, but the snowboarding concussion you sustained two days ago is about to wreak havoc on your whole body for years to come.

By the end of this week, you won’t be able to stand up without fainting. You will have trouble breathing, stabbing chest pains, and your GI tract will essentially stop working. Don’t be afraid. You will be OK, eventually, but you are about to begin a difficult journey. Dig deep into your soul to find your strength and resilience, because you’re going to need it.

Over the next two years, you will get to know the ceiling tiles in the local Emergency Room quite well. You will go to many doctors asking for help, but most of them will not help. Some won’t know how to help you, despite their best efforts. Others will cast doubt on you, suggesting that your symptoms are “all in your head.” Do not waste your limited energy being angry with them or trying to change their minds. This is a reflection of their ignorance. You deserve better. Keep searching until you find doctors who believe you, who want to help you, and who have the expertise needed to help you. You will find them, eventually. Do not give up searching for answers, even when you are told to do so.

Trust your gut instincts. After being told over and over again that you are wrong, you will have feelings of self-doubt, but do not let anyone take away your self-confidence. Everything that you feel in your gut turns out to be correct. Remember than no one knows your body better than you do. You’ve lived in it for 31 years.

As weeks turn into months, you will go from a curvy size 12 to a barely size 2. At first, you won’t mind having to borrow trendy clothes from your younger, skinnier sister. But soon you will realize this is not a healthy weight loss. Your GI tract will not properly absorb nutrients or fats. Always a hearty eater, you will enjoy increasing your caloric intake to 4,000 nutrient dense calories per day – loading up on beans, peanut butter, almonds, meat, protein shakes – it doesn’t matter, you will keep losing weight. Your doctor will assume you have an eating disorder, even though you are doing everything humanly possible to gain weight. Your hair will start falling out, but you will get it back, eventually.

As the months wear on, you will find out who is a true friend and who is merely window dressing.  While it is certainly unpleasant to learn that you do not really matter in the lives of some people you thought you mattered to, consider this a blessing. In your life, version 2.0, you will be able to focus on relationships that bring you as much joy as you put into them.

Your love of science will play an important role on this journey. Ignore those who tell you to stop reading medical journals, and those who insinuate that you are not intelligent enough to understand what you are reading. Not only will your insatiable curiosity lead to you figuring out your own diagnosis, it will lead to you conducting medical research and publishing journal articles. You won’t believe this right now, but you’re going to lecture at Harvard Medical School someday. Keep reading. Keep asking questions. Do not be afraid to venture into the intellectual unknown.

Since it will be hard for you to sit upright or walk, your body will become very deconditioned, and this will make you feel much worse. Reversing this will be one of the hardest things you’ve ever had to do, and it will be a constant battle to prevent it from returning. The sooner you get started, the better. People will tell you to push yourself, and you will get very annoyed at them, because you think they don’t understand. They may not understand, but I do, and I’m telling you they are correct. You will never get where you want to be if you don’t push yourself with every ounce of your being. After you get your strength back, you will have to learn when to push and when to rest. It is not something that can be taught, at least not to you, because you are stubborn like your grandmother.

You will feel as though your world is falling apart, and it will. This illness will place tremendous burdens on your health, your marriage, your family, your career, your finances, and your social life. Life as you know it will be shattered, and you will have to work very hard to put the pieces back together again. Every piece of your life you reclaim will feel like a little victory. This will teach you to appreciate every blessing in your life; every moment will feel like a gift. You will rejoice at simple things that once seemed like a chore. The first time you are able to go food shopping by yourself again, you will find yourself crying tears of joy in the produce aisle. You will learn to appreciate the ants crawling in the grass on a sunny day. Sitting in your garden will preserve your sanity when you can do little else.

Your dog will be your most loyal friend during this whole ordeal. She will lay by your side day and night, giving extra kisses and snuggles when you are blue. She will keep you company when you need it. You will feel very alone at times, but you will eventually meet many new people along your journey. You will find a second family of people just like you.

When you can no longer practice law as you once did, you will feel as though you have lost your identify. You will always be a lawyer, but this identify crisis will help you figure out who you really are. At first, without the hustle and bustle of your former life, you will feel like nothing. But everyone is something, and that something is entirely up to you.

You will learn another hard lesson – that improving your health is largely in your own hands, even when you have the best doctors and best medicine available. This is an intimidating and at times frightening responsibility to accept, but the sooner you embrace it, the sooner you will realize how empowering it is.

You may not believe me for some time, but I promise this gets easier. Let go of the past, because you can’t get it back. Look towards the future and create new goals for yourself. Be thankful for the good things in your life, and no matter what happens, just keep swimming.

Love,
January 2, 2017 Me

PS – Don’t eat your mother’s meatloaf on August 14, 2012. Trust me.

PPS – At the risk of creating a galaxy destroying paradox in the space-time continuum (which we learned about in Back to the Future), I’m going to save you from two years of misdiagnosis hell and let you know that your concussion caused POTS and Sjogren’s. Find an autonomic neurologist named Kamal to get a proper diagnosis, and learn to love salt.

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Does Santa Have Dysautonomia?

We all know that Santa Claus visits millions of children around the world on Christmas. But what about his health? How is he doing?

Santa’s medical chart says he’s a 1,746 year-old married male with a jolly disposition.

santa3He consumes an excessive amount of cookies and milk at least one night per year, but his big black belt with a few extra notches suggests he’s probably a cookie fiend all year long. While Santa’s big belly is part of his lovable charm, his extra weight puts him at risk of hypertension and diabetes. 25% of all diabetics develop autonomic neuropathy, especially people who have had diabetes for a long time (like 1700 years…).

Santa may be of Scandanavian descent, which puts him at higher risk of developing celiac disease. If Santa has celiac disease, those cookies will turn him into a jolly old ball of inflammation that can lead to autonomic neuropathy.

Santa’s red flushed face may be simply due to the cold wind he encounters while flying around the globe at high speeds. However, it could also be mast cell activation syndrome, which can occur with some forms of dysautonomia. We think he needs an appointment with Dr. Lawrence Afrin, and in the meanwhile, he may want avoid MCAS triggers (especially reindeer poop!).

Santa Smoking
Santa was a smoker for the first 1700 years of his life. He quit in the 1980s. Before this, he was often seen with a pipe. Smoking increases the risk of hypertension, stroke and heart disease – all of which involve some element of autonomic dysfunction. His friend Frosty the Snowman still smokes sometimes, exposing Santa to second hand smoke. And let’s not forget the exposure to chimney soot that Santa breathes in every year! Dr. Svetlana Blitshteyn suggests that Santa see his doctor to get screened for lung cancer, given his 1700 year history of smoking and chimney soot exposure. She notes that in rare cases, some forms of lung cancer can cause paraneoplastic syndrome, which can cause dysautonomia.

Santa’s says his heartbeat feels like jingle bells. Since the heart rhythm is set by the autonomic nervous system, this may be a form of dysautonomia. Santa’s cardiologist ordered a 24-hour Holter monitor to keep an eye on things as he delivers presents this Christmas, but Santa’s insurance company denied coverage for the test. We know who’s going on the naughty list this year!

snowyhillsWhen Mrs. Claus came down with the same jingling heart condition, the doctor at Snowy Hills Hospital emergency room told her there was nothing wrong and it was all in her head.

reindeer
Prancer wanted to leave a special present on that doctor’s windshield in honor of Mrs. Claus and all of the female elves who have been treated the same way at Snowy Hills Hospital, but Rudolph convinced him that hosting a physician education course with Dysautonomia International at Snowy Hills Hospital was a better way to educate doctors about jingle heart syndrome and other forms of dysautonomia. Dr. Blair Grubb, being the first to discover jingle heart syndrome when he was four years old, will travel to the North Pole next year to teach the doctors at Snowy Hills Hospital about this complicated and often misdiagnosed condition.

While Santa’s tests results are always normal and everyone says “he looks fine,” he has several risk factors for developing dysautonomia.

You can do your part to keep Santa healthy! Skip the cookies and milk this year, and leave him organic locally-grown free-range kale chips and freshly pressed home-grown almond milk. #KeepSantaHealthy #KaleNotCookies

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Happy holidays from all of us at Dysautonomia International! We wish you and your family a joyful holiday season and a happy, healthier new year!

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Life Hacks for Dysautonomia Patients

An empowered patient’s approach to living well with dysautonomia.

Dysautonomia is group of serious, complex medical conditions featuring a wide variety of symptoms ranging from mildly annoying to totally debilitating. Some patients may not be severely impacted, while others may be homebound and bedridden. But nearly all of us have had to make some adjustments to our lives in order to cope with chronic illness. I’m here to share a few tips and tricks I’ve acquired on my own journey. I hope you can garner some helpful insight and inspiration from what I’ve learned along the way.

Let the gadgets do the work for you.
Some days, despite our best efforts to feel better, we may still struggle with pain and fatigue. While it can be healthy and positive to push yourself to a certain degree on the good days, some days you simply can’t muster up the strength to vacuum your home or wash the car. And that is perfectly okay. Forgive yourself for it. Instead, ask for help. When help is not available, let devices like robotic vacuums or a trip through the car wash do the trick. We live in the 21st century, so let’s take advantage of all that modern technology has to offer! Since I developed POTS, I have actively sought ways to make my life easier so that I can save whatever energy I do have for the things I love instead of draining my energy exclusively on daily chores. For instance, I use my dishwasher not only to clean my dishes, but also to sanitize my cutting boards, scissors and even my toothbrush. Make your gadgets do double duty!

gadgets“Go go gadget make me dinner!”

Cultivate the things you love.
While dysautonomia may change the way you live your life or the pace at which you live it, it need not change the things you love. You may just have to be open to finding new ways to enjoy the things you love. While I can no longer dance ballet, I can still enjoy it but now as a spectator— something I could not do while I was dancing on stage. I can also shamelessly indulge in dance reality television shows and have made new friends who share this interest as well. POTS has forced me to significantly slow the pace at which I live my life, and that is not necessarily a bad thing. It sounds like the ultimate cliché: stop and smell the roses! Chronic illness prompts you to take a step back and re-prioritize what is really important in life and also gives you the ability to find beauty in the ordinary, everyday things. Sometimes it really is the little things that count and the simple things that can make you the happiest!

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Make your total health a priority.
While life with dysautonomia can often feel like a series of daunting, endless medical appointments that we are obligated to attend as cooperative patients, it’s important to devote time each and everyday to actively improving your own personal mental and physical health. Whether that means practicing a few minutes of yoga, finding dysautonomia-friendly recipes on Pinterest, or talking on the phone to a friend, these are all ways to take an active role in bettering your health. There is no need to become fanatical about a particular diet, vitamin supplement or strict exercise regime. Even a few minutes of light exercise each day can make a vast improvement in your overall health and wellbeing. Always be sure to ease into any exercise and nutritional changes under the care of your physician.

meditate“Saaaaaaaaaaaaaaaaaaaaaaaalt.”

Being an empowered patient means being an informed patient.
So much new and exciting medical research is happening every year that it can be hard to keep up! Understanding your medical condition can help you cope with it. Visit our medical journal articles page to find key journal articles on different forms of dysautonomia. Staying abreast of current research can help, too. It is mutually beneficial to share the latest research updates with your doctors, who may not have as much time as they would like to devote to researching your condition. If you find the research for them and share it with them, most doctors are happy to oblige and give it a read to see if it may benefit you. Visit the Dysautonomia International Facebook page often and sign up for our email list to find out about the latest research. Check out the research related posts on this blog, too.

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Be proactive and get involved.
One really good way to regain some control over your situation is to get involved in efforts to make life with dysautonomia easier for yourself and others by volunteering for Dysautonomia International. It may seem difficult to find the energy to volunteer when you are already dealing with challenging health problems and your daily responsibilities, but if you can find a way to volunteer, I bet you will be glad that you did. Volunteering boosts self-confidence and reminds us that we are still productive members of society even if we aren’t running on all cylinders. It just feels good to know you have helped someone else going through the same thing you have been through. There are several ways you can help: raise awareness, raise funds for research, help counsel newly diagnosed patients, volunteer your talents, etc.

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Guest author Kristina Marie graduated from the University of Puget Sound with bachelor’s degrees in both Communication and English. She produced and hosted a government television talk show series called ‘Health Watch’ and is a founding member of Dysautonomia International’s Patient Advisory Board. She became symptomatic her senior year of college and has since made it her mission to become an informed and empowered patient.

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Teen with POTS ‘Just Keeps Swimming’ All the Way to Rio

When a respiratory virus turned into a mystery illness, 16-year-old Hannah Aspden found herself dealing with debilitating symptoms. Daily tasks became difficult, and her normal routines started to fall apart. Three months later, she was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS).

Hannah 3Swimming has always been a large part of Hannah’s life. Having been born without her left leg, Hannah began swimming at age four. After swimming for twelve years, Hannah has worked her way to the Paralympics. However, keeping up with a rigorous practice schedule in addition to attending school became difficult after her POTS diagnosis.

“In the beginning, I had extreme exercise intolerance which made it impossible to keep up with my usual training schedule,” Hannah said. “Each day can be very different from the one before it. Pushing through the aches and pains and “uncontrollables” has been difficult, but to me, it is worth it.”

Like many POTS patients, it took time for Hannah to adjust to her new normal. As she dealt with her new diagnosis, she tried to focus on both her school work and swimming. Many POTS patients find school difficult, especially the early mornings when symptoms are often worse. For Hannah, her symptoms included difficulty with concentrating and memorizing facts. However, according to Hannah, her symptoms are “definitely a lot better now” than they were when she was first diagnosed.

A regime of medication, increasing salt and fluid intake, and exercise has improved Hannah’s symptoms. Throughout it all, she remained determined to continue swimming.

Hannah 1After countless hours of practicing, Hannah made it to the Paralympic trials, which determine which athletes will compete in Rio this summer. When she was at the trials, Hannah said she repeated the phrase ‘Just keep swimming…just keep swimming…what do we do? We swim’ from Finding Nemo to remind herself to keep going even when things were difficult.

“I tried to set an example and encourage those newer swimmers to just follow their hearts and have fun with all of it,” Hannah said. “And of course, I was really hoping to swim well enough to make the team for Rio.”

In Rio, Hannah will get the chance to meet with athletes around the globe. In addition to representing the United States at Rio, Hannah is excited to represent parathletes.

“The experience of being there with Team USA and getting the incredible opportunity to represent my country on such a large stage is what I am most excited for,” Hannah said. “Spending time with my teammates and coaches, racing, and learning as much as I can will be so much fun! Helping progress the Paralympic Movement here in the U.S. is truly something I am blessed to be a part of.”

Throughout everything she has experienced, Hannah’s perseverance has pushed her forward. Her love for swimming and acknowledgement of the support she has encouraged her to ‘just keep swimming.’

“Knowing that my passion for swimming hasn’t faded through the years is such a motivation to keep going,” Hannah said. “I’ve been given a very rare and wonderful opportunity in life, and it gives me the chance to represent my country, my team, and all that we stand for. It is something that I could never take for granted. Knowing that I have teammates, coaches, family, friends, and others I may never have even met that support me unconditionally really means the world.”

Hannah swimming at the Paralympic trials. Photo: Getty Images North America
Hannah swimming at the Paralympic trials. Photo: Getty Images North America
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Will’s Carnival for a Cause – Kids Making a Difference!

13-year-old Will Kenney and his mother Sandy Kenney recently reached out to Dysautonomia International with a unique proposal. They wanted their third annual “Will’s Carnival for a Cause” at Chick Berry Farms in Laurel, Delaware scheduled for August 6, 2016 to benefit Dysautonomia International. We caught up with Will recently to learn about Will’s inspiring efforts.

Screen Shot 2016-03-09 at 7.44.00 PMQ: How did you come up with the concept for Will’s Carnival for a Cause?
A: In January 2014, I decided that I wanted to do something productive with my summer break instead of watching TV and playing video games. My mom was sharing Facebook posts about a two-year old girl, Stella, who has Sturge Weber Syndrome. Stella and her family donated the book “Sam’s Birthmark” to local schools and libraries and super hero capes to children at A.I. Dupont Hospital. Stella and her family inspired me to want to help raise awareness and funds for the Sturge Weber Foundation. I also wanted to organize an event that Stella could enjoy. That’s how I decided to host the first Carnival.

Q: How long have you been organizing this event?
A: This year’s Carnival is my third event. Planning for the Carnival takes approximately six to nine months.

Screen Shot 2016-03-09 at 7.46.04 PMQ: What made you want to add Dysautonomia International as a cause you wanted to support this year?
A: The Carnival has been a huge success for the past two years, raising over $15,000 to benefit the Sturge Weber Foundation and raising much needed awareness.  I have a friend, Rita Chandler, who helped with the Carnival last year, who has postural orthostatic tachycardia syndrome (POTS). One of my mom’s cheerleaders, Crystal Caldwell, also has POTS. I had never heard of POTS before, so I reached out to Dysautonomia International to learn more.  After learning about POTS, I decided to include Dysautonomia International as one of the organization’s we’re raising money for this year.

Screen Shot 2016-03-09 at 7.44.39 PMQ: What kind of attractions do you have at the Carnival?
A: The Carnival features games, a petting zoo, a hayride, pony rides, a duck train, a DJ, a bounce house, a dunking booth, food, face-painting, and a silent auction. The first Carnival had 16 games and the second Carnival had 23 games. I am planning on expanding this year’s Carnival to include seven new games, more entertainment, and rides. I am working on making the Carnival bigger and better to support the causes that are important to me.

 

Q: How many people attend the Carnival?
A: The first Carnival had 150 guests, and the second Carnival had 300 guests. During both years, I had about 50 volunteers helping with the event.  We hope even more people will come this year!
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Screen Shot 2016-03-09 at 7.45.29 PMQ: Do you have any advice for other teens who want to start a fundraiser for Dysautonomia International?
A: Organizing and planning a fundraiser for an organization gives you a rewarding feeling because it gives you a chance to help and make a difference for so many people in need. I recommend thinking about an event that the community would enjoy and also one that would be fun to plan. I have a notebook that I use to continuously jot down ideas until I am ready to approach each one of them individually. Also, remember to get your community involved. Last year, we invited Miss Delaware, Brooke Mitchell, to join us at the Carnival. She was excited to be a part of it, meet the attendees, sign autographs. My local Councilman, Rob Arlett, volunteered to get in the dunking booth. I also recruited my football team and coaches to help. The football players especially loved it because they were helping move a great cause forward. My coaches also got in the dunking booth which was doubly fun. The Carnival has been so much fun to plan and it was a great way to meet a lot of wonderful people.

Screen Shot 2016-03-09 at 7.46.24 PMQ: If someone wants to donate prizes or volunteer during this year’s event, how can they contact you?
A: You can make a silent auction donation or a prize donation for the children’s games by contacting me via my Facebook page, Will’s Carnival for a Cause. You can also email me at skenney86@yahoo.com. I am looking for rides and entertainment such as clowns, magicians, jugglers, etc. I welcome all your ideas and help!

Q: How can people attend the event? Do they buy tickets in advance and/or on site? How can we learn more about or get involved with Will’s Carnival for a Cause?
A: To learn more about Will’s Carnival for a Cause, like and follow my Facebook page. I am very excited about this year’s Carnival. The Carnival is scheduled for August 6th, 2016 from 4pm-7pm. It will be held at Chick Berry Farm in Laurel, Delaware. Wristbands are $10 each which covers children’s games, rides, and activities or tickets are $.50 each. Wristbands and tickets can be purchased on site at the Carnival.

As my friend Ruth Ann Marvel said, “Raising money is great, but raising awareness is priceless.” And, as I have learned, one person can’t move a mountain, but a village can. So, come be a part of my village.

We love this kid. Thanks Will, we’ll see you on August 6th!

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Meet the Office Intern!

Last month we introduced you to the 2016 Dysautonomia International Summer Research Interns.  This month we’re pleased to announce that Ms. Emily Deaton will be interning with Dysautonomia International’s Board of Directors this summer, helping with writing projects, educational programs, web development, conference planning, and more.

EmilyHeadshotQ: Tell us a little bit about yourself.
A: My name is Emily Deaton and I’m majoring in English with a minor in nonprofit studies at James Madison University in Harrisonburg, Virginia. I’m 20 years old and have lived in Virginia for most of my life. I love writing, editing, and spending time with my family (and pets).

Q: What motivated you to get involved with Dysautonomia International?
I’ve had POTS for four years, and Dysautonomia International was one of the first resources I came across when I got diagnosed a year after getting sick. Ever since then, I’ve tried to learn as much as I can about POTS and have worked to advocate for myself and for others with POTS and other chronic illnesses.

Q: How do you balance your school and work activities with your health?
A: It’s difficult! I’ve had to learn when I can push myself and when I need to take a step back to skip out on a social event to ensure I can go to class the next day. There will still be days where I push myself too hard and have to pay for it the next day (or three). Having a supportive network of friends and family has made all of this much easier, however, and I’ve also been lucky to have professors who have accommodated me.

Q: What are your plans after college?
A: I want to continue to advocate for those with chronic illnesses. I’d love be a copy writer at a nonprofit in order to educate others about how to be as well as possible while living with life-altering conditions.

Q: What do you hope to get out of the Dysautonomia International Internship?
A: I’m looking forward to learning the ins and outs of a nonprofit, and I’m also hoping to learn how to better reach people who are in need of resources to better deal with their condition(s). I want to be able to use my communication skills to connect with patients and educate people who are unaware of what dysautonomia is.

Q: If you could give one bit of advice to a newly diagnosed patient, what would you want them to know?
A: Know you’re not alone. There will be good days and bad days, but you will learn to live a new normal. Seek support from doctors, friends, and family; you know your body best, so trust your intuition. If you need to rest, know it’s okay, and you can still live a meaningful and happy life.

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