Dating is already complicated. Add dysautonomia into the mix, and suddenly things like meeting for coffee, standing in line for a movie, or staying out past 9 p.m. can feel totally overhwleming. If you’re single and living with dysautonomia, you may find yourself wondering: Is dating even worth the effort?

The answer is it absolutely can be, but it may look different than it does in the movies. Dating with a chronic illness requires flexibility, honesty, and understanding about the unpredictable nature of your body. It’s okay if your journey doesn’t follow the usual script. You deserve connection, companionship, and joy just as much as anyone else.

Here are some tips to help you navigate the dating world while living with a chronic illness. 

1. Be Honest (But You Don’t Have to Share Everything on the First Date)

One of the biggest questions people ask is when to talk about dysautonomia. There’s no perfect timeline. Some people prefer to share early, others wait until they feel more comfortable. What matters most is that you share when it feels safe and natural for you.

You don’t owe anyone your full medical history right away. If you do choose to talk about it in the beginning, but don’t feel like explaining everything right off-the-bat, try saying things like: :

• “I live with a chronic condition, so I’m more into coffee dates than night clubs.”
• “I’m not into heart-racing horror movies, but I love a good rom-com.”
• “Looking for someone who enjoys low-key adventures.”

This helps set expectations without turning your profile into a medical chart. It also tends to filter out people who wouldn’t be compatible with your lifestyle anyway, which saves you time and heartache.

If someone disappears after learning about your condition, that’s not a failure. It’s information. You’re looking for someone who can meet you where you are, not someone who expects you to pretend to be someone you’re not.

2. Redefine What a “Good Date” Looks Like

Dating doesn’t have to mean loud bars, long walks, or hours of activity. A great date can be sitting in a park, watching a movie, having a picnic with salty snacks, or grabbing a drink somewhere with air conditioning and chairs.

Instead of saying, “I can’t do that,” try something like “Would you be open to something more low-key, like brunch or a movie?”

Low-pressure, low-exertion dates can actually make it easier to connect. You get to talk, laugh, and be present instead of silently fighting dizziness or fatigue. Planning dates that fit your body’s needs is not “high maintenance.” It’s self-respect.

3. Pace Yourself (Physically and Emotionally)

It’s easy to feel pressure to keep up with “normal” dating expectations like texting all day, going out multiple times a week, or staying out longer than your body wants to. But pushing too hard can lead to symptom flares and burnout.

It’s okay to say:

• “I had a great time, but I need a rest day tomorrow.”
• “Can we plan something shorter this week?”
• “My symptoms are acting up, can we reschedule?”

The right person won’t see this as rejection. They’ll see it as communication.

Dating should add to your life, not drain it completely.

4. Let Yourself Be Vulnerable 

Dating with dysautonomia can come with fear. Fear of being judged, fear of being seen as a burden, fear that someone won’t want a partner with health limitations. These feelings are valid, but they don’t define your worth.

Your condition is part of your story, not the whole story. You still bring humor, intelligence, kindness, creativity, and connection into a relationship. Vulnerability doesn’t mean oversharing all at once. It means letting someone gradually see the real you, including your challenges and your strengths.

5. Watch for Green Flags (and Red Flags)

Dating can be a crash course in human behavior. Pay attention to how people respond when you talk about your health.

Green flags:

• They listen without trying to “fix” you
• They ask respectful questions
• They don’t pressure you to do more than you can
• They’re flexible with plans

Red flags:

• “You don’t look sick”
• “Can’t you just push through?”
• Getting annoyed when you need to reschedule
• Harshly making fun of your symptoms (not in a cute playful way)

You’re not being picky by wanting someone who respects your boundaries. You’re being smart!

A Final Thought

If dating feels hard, that doesn’t mean you’re doing it wrong. It means you’re navigating a world that wasn’t built with chronic illness in mind, and that’s not your fault. You deserve relationships that are patient, flexible, and understanding.

There will be awkward moments. You might faint on a date. You might need to sit down mid-conversation. You might cancel plans last minute. And that’s OK. Love doesn’t require perfect health.  It requires honesty, compassion, and connection. And those are things you already have. 

Dating with dysautonomia may not look glamorous, but it can still be sweet, funny, and real. The people who matter won’t be scared away by your reality, they’ll want to understand it.

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The start of a new year often brings a flurry of goals, like new diets, workout plans, “productivity hacks,” and endless lists of things to achieve. But if you live with dysautonomia, those traditional resolutions can feel out of sync with your reality. You might wake up one day full of energy and the next completely drained. And that’s okay.

This year, instead of chasing perfection, try creating resolutions that honor your body and nurture your well-being. Here are some ideas to guide you toward a gentler, more sustainable kind of self-care in the new year.

1. Prioritize Hydration (and Salt)
It’s not glamorous, but it’s essential. Staying hydrated and keeping your electrolyte balance steady is one of the most powerful tools for managing dysautonomia symptoms. Try setting reminders to drink throughout the day, carrying a refillable bottle with electrolyte packets, or keeping salty snacks handy. It’s not about being rigid, it’s about creating small habits that support your stability.

2. Practice Setting Boundaries
Give yourself permission to say “no” when you need to do so to protect your health. Taking time to prioritize yourself is not selfish, and it is an important part of learning to manage a complicated chronic illness. Boundaries may vary day-to-day, or over the long-term. Listen to your body, and trust your instincts.

3. Create a Morning or Evening Ritual
Structure can bring calm to unpredictable days. Maybe it’s a five-minute stretch, a quiet cup of tea, a gentle walk after dinner, or turning off electronic devices an hour before bed. Consistent rituals help ease anxiety and ground your day in something gentle and familiar.

4. Redefine “Exercise”
You don’t need a gym membership or intense workout plan to feel strong. For many people with dysautonomia, movement might mean gentle stretching in bed, chair yoga, or short walks on “good days.” The goal isn’t pushing limits, it’s reconnecting with your body in ways that feel supportive and kind.

5. Celebrate the Small Wins
Maybe you stayed hydrated all week. Maybe you had less fatigue, or remembered your meds on time. These moments matter. Keep a small gratitude or “tiny victories” journal to remind yourself of progress. Over time, you’ll see how much you’ve accomplished, even when it doesn’t look like a traditional resolution list.

6. Build a Support System
Connect with others who get it. Remember: asking for help isn’t a failure. It’s a form of self-care that keeps you from burning out. Connecting with your local Dysautonomia International Support Group is a great way to build a support system.

7. Cultivate Joy
Living with a complicated chronic illness like dysautonomia can sometimes be socially isolating, and can make it harder to do some of the activities that bring us joy. One way to address this is to seek out joy with intention. Create a list of things that bring you joy, that you can do even when you’re having a bad symptom day, and then do at least one joyful thing each day. Create a “can-do” list of things that bring you happiness each day. That may be something different for everyone! Cuddling with a pet under a pile of fluffy blankets, movie night with your family, playing games online with friends, trying a new recipe, taking a painting class, reading a good book, etc. No matter what it is, find something good in every day.

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As you move into the new year, remember that progress with dysautonomia rarely looks linear, and that’s okay. Resolutions don’t have to be big or bold to be meaningful. The most powerful commitments are often the quiet ones: honoring your limits, celebrating what your body can do, and choosing compassion over comparison. This year, let your resolutions be rooted in care, flexibility, and grace. You are not behind, you are not failing, and you are not alone. Every small step you take toward supporting your health is a victory worth recognizing.

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New Year’s Eve often comes with sparkling drinks, late nights, and celebrations that can be exhausting and dehydrating. But that doesn’t mean you have to skip the fun entirely.

These dysautonomia-friendly mocktails are festive enough to feel special, while still supporting hydration. Whether you’re celebrating at home or hosting friends, these mocktails let you ring in the New Year in a way that feels good for your body.

Turquoise Sparkler

Ingredients:

• ¾ cup coconut water
• ¼ cup sparkling mineral water
• Juice of ½ lime, plus extra for rim of glass
• A splash of blue curaçao or butterfly pea tea for color
• Salt for rim of glass
• Ice

Instructions:

Rim a glass with lime juice and salt. Add coconut water and lime juice to a glass. Add ice and top with sparkling mineral water. Garnish with a lime wheel or rosemary sprig if desired.

Berry Electrolyte Fizz

Ingredients:

• ½ cup electrolyte water (or water + electrolyte mix)
• ¼ cup mashed strawberries or raspberries
• ¼ cup sparkling water
• Ice

Instructions:

Muddle the berries in the bottom of a glass. Add electrolyte water, stirring gently. Add ice and top with sparkling water. Strain if texture sensitivity is an issue.

Salted Citrus Refresher

Ingredients:

• ¾ cup water or sparkling water
• Juice of ½ lemon or orange
• ¼ teaspoon salt (to taste)
• Optional: 1 teaspoon honey or agave
• Ice

Instructions:

Stir all ingredients together until the salt dissolves. Serve over ice. Garnish with a citrus peel if desired.

Coconut Snow Mocktail

Ingredients:

• ¾ cup coconut water
• ¼ cup pineapple juice
• 2 tbsp coconut milk
• Pinch of salt
• Crushed ice

Instructions:

Blend or shake until frothy and smooth. Garnish with coconut flakes or a pineapple wedge.

Salted Pomegranate Cooler

Ingredients:

• ½ cup pomegranate juice
• ½ cup water or sparkling water
• ¼ tsp sea salt
• Squeeze of lemon juice
• Optional: mint leaves, lemons, or pomegranate arils

Instructions:

Stir salt into the juice until dissolved, add lemon and water, and garnish with desired additions.

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You deserve a New Year’s celebration that supports your health and brings a little joy. Whether you’re toasting at midnight or heading to bed early, these mocktails are a gentle reminder that caring for your body is always worth celebrating.

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We are excited to share news of an important milestone for the dysautonomia community!

This month, we launched the first Dysautonomia International Autonomic Disorders Fellowship, a one-year advanced clinical training program designed to prepare physicians to become expert leaders in autonomic nervous system disorders. The fellowship curriculum was designed with the needs of our patient community in mind. Upon completion of the program, fellows will be prepared to lead new dysautonomia clinics, advance research, and contribute to improving care for millions of people living with dysautonomia.

The inaugural fellowship, with funding to support one fellow per year for the next three years, will be hosted at the University of Toledo Medical Center, under the supervision of internationally renowned dysautonomia specialist Dr. Blair Grubb, Distinguished University Professor of Medicine and Pediatrics and Director of the Syncope and Autonomic Disorders Clinic at the University of Toledo. 

Autonomic disorders impact over 70 million people around the world. Yet despite the high prevalence, there remains a severe shortage of clinicians trained to diagnose and treat these conditions. Globally, there are fewer than 75 physicians board-certified in autonomic disorders, and only five medical schools offer autonomic fellowship programs. We are determined to change that!

The Dysautonomia International Autonomic Disorders Fellowship will provide comprehensive training in the diagnosis and treatment of postural orthostatic tachycardia syndrome, neurocardiogenic syncope, autonomic small fiber neuropathies, pure autonomic failure, and many other autonomic disorders. The fellows will also learn about many diseases associated with dysautonomia such as Sjogren’s, Parkinson’s, Ehlers-Danlos syndrome, long COVID, and mast cell activation syndrome, to name just a few.

“This fellowship fills a critical training gap,” notes Dr. Grubb. “We’re excited to partner with Dysautonomia International to mentor the next generation of physicians committed to advancing autonomic medicine.”

We are working to create autonomic fellowships at other medical schools too, which will be announced in early 2026. Our fellowships and other clinician education programs are made possible thanks to generous donors like you. If you would like to help us continue expanding clinician education, funding research, and supporting patients and families affected by dysautonomia, we invite you to make a gift today at CureDys.org.

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Sjogren’s is the second most common cause of autonomic neuropathy, and April is Sjogren’s Awareness Month, so we invited guest blogger Sarah Schafer, MD to share some information on Sjogren’s for the dysautonomia community.

Your dysautonomia may be caused by Sjogren’s disease.
Here’s why that matters.

I’m a medical doctor with POTS and Sjogren’s disease. It took years to get diagnosed, and I’m determined to make sure no one else goes through the ordeal I’ve had to endure.

I’ve had symptoms of both postural orthostatic tachycardia syndrome (POTS) and Sjogren’s since I was a teenager. Though I felt increasingly unwell as I aged, I remained able to function until a sudden decline at 44, when extreme fatigue, lightheadedness, and other symptoms left me mostly bedridden. I lost my career, my ability to do things with my children, and almost everything else I loved to do.

This was the early 2000s. My doctors never considered Sjogren’s, even though I had classic symptoms, including 25 years of specialty treatment for severe dry eyes. Neither they nor I knew much about Sjogren’s, and none of us had heard of POTS.

After a year of normal tests, my doctors started downplaying my symptoms as being caused by stress or depression. I wasn’t depressed. My symptoms weren’t caused by stress; they were caused by Sjogren’s and POTS. I was stressed because I was severely ill and unable to get a proper diagnosis and care.

Even though I’m a doctor, I encountered the same dismissal and psychologization of my symptoms that many women face when doctors can’t find a diagnosis. Fortunately, my medical knowledge enabled me to research scientific literature, which helped me figure out that I likely had Sjogren’s and POTS.  I then used my research to advocate with my doctors for a Sjogren’s diagnosis, and later, to educate them about POTS.

Although treatments have helped somewhat, they came too late for me to have the quality of life I could have had with earlier intervention.

What is Sjogren’s disease?
Sjogren’s is a serious autoimmune rheumatic disease that affects many body systems. Sjogren’s is never just dry eye and dry mouth, even though that is how it was originally described.

Sjogren’s disease is a common cause of dysautonomia.
Most people with Sjogren’s disease have dysautonomia, which can cause a multitude of conditions such as POTS, orthostatic hypotension (OH), stomach, gut, and bladder problems, and unusual sweating. But most doctors don’t know much about dysautonomia and don’t realize that many symptoms of Sjogren’s disease are related to dysautonomia. If you have dysautonomia, you might also have Sjogren’s.

Why is it important to know if you have Sjogren’s?
Sjogren’s is a complex and unpredictable disease that frequently leads to a significant decline in quality of life, mainly related to fatigue and pain, not dryness. In some instances, especially if it’s not diagnosed and monitored closely, Sjogren’s can be life-threatening.

Sjogren’s disease can damage nerves, organs, and joints, sometimes without producing obvious symptoms. The only way to detect this silent damage is by monitoring Sjogren’s patients for a wide range of systemic manifestations. Early detection of systemic (non-dryness) manifestations allows for timely intervention, when treatments are most likely to be effective. Contrary to what some doctors may tell you, there are treatments that help slow the progression of Sjogren’s disease, make you feel better, and sometimes even save your life.

Early symptoms of Sjogren’s disease
Sjogren’s affects everyone differently. While doctors are taught to look for dry eyes and mouth as signs of Sjogren’s, most people seek a diagnosis because of other symptoms like fatigue, cognitive problems, and pain, not dryness. And dry eyes and mouth aren’t always present, especially in people with neurological problems like dysautonomia.

Doctors often overlook lightheadedness (due to POTS or OH) and painful neuropathy as early Sjogren’s symptoms. Other common early symptoms include severe fatigue, widespread pain, cognitive dysfunction (or “brain fog”), severe headaches, difficulty swallowing or digesting, joint and muscle pain, a persistent cough, shortness of breath, and Raynaud’s phenomenon.

It’s possible to have many of these symptoms, or none of them. Since most doctors aren’t trained to recognize all the different ways Sjogren’s can show up in the body, they frequently mistake it for fibromyalgia, irritable bowel syndrome, anxiety, or functional neurological disorder (FND).  

Why is Sjogren’s diagnosis missed or late?
Extreme delays in Sjogren’s diagnosis are common because clinicians receive minimal education about Sjogren’s disease. The limited information they’re provided is often inaccurate and outdated. Many medical educators perpetuate the misconception that Sjogren’s is a rare, unimportant dryness syndrome, primarily affecting middle-aged women.

The reality is that:

• Sjogren’s is common, not rare.  Sjogren’s disease affects approximately 1 in 100 people in the US (most cases are undiagnosed), similar to the prevalence of rheumatoid arthritis (RA) and three times that of lupus. RA and lupus are closely related diseases that receive far more attention than Sjogren’s disease.
• While many people with Sjogren’s disease experience dry eyes and mouth, there is no dryness-only version of Sjogren’s.
• Although 9 out of 10 Sjogren’s patients are women, Sjogren’s can affect anyone, at any age, including men and children.
• Sjogren’s often begins in childhood or early adulthood, but diagnosis is frequently delayed for decades, when the disease has caused significant damage and symptoms become unmanageable.

Sjogren’s diagnosis: what you need to know.
If you think you might have Sjogren’s, talk to your doctor about testing. Getting a diagnosis can take time, especially if your blood tests for SSA and SSB are negative, which is common in people with Sjogren’s and dysautonomia.

You may need to learn a lot about Sjogren’s and be your own advocate to get diagnosed and treated properly.  Many doctors only know about dryness and may not know which tests to use. Some rheumatologists misuse classification criteria as a rigid checklist, leaving many people living with Sjogren’s undiagnosed, unmonitored, and untreated.  I founded my website, Sjogren’s Advocate, to give patients the tools and strategies they need to advocate for themselves when they encounter barriers to diagnosis and care.

Hope is on the horizon.
New treatments for systemic manifestations, expected soon, should raise awareness among doctors that Sjogren’s is not a rare, unimportant dryness syndrome primarily affecting middle-aged women. Even if these new medications aren’t a good fit for every patient, the increased visibility of Sjogren’s will hopefully improve diagnosis and care.  Until medical education catches up to the realities of Sjogren’s disease, self-advocacy remains key.

Guest blogger Dr. Sarah Schafer founded Sjogren’s Advocate in 2018 as part of her mission to improve patient awareness and care. The Sjogren’s Advocate website is a great resource for anyone who is looking for more information on Sjogren’s.

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Interested in learning more about Sjogren’s? Check out these Dysautonomia International educational videos.

Dysautonomia International President Lauren Stiles and Patient Advisory Board Chair Jennifer Samghabadi, F-NP, and Dr. Sarah Schafer from Sjogren’s Advocate share what dysautonomia patients need to know about SJogren’s and discuss their own experience with POTS and Sjogren’s.

Dysautonomia International Medical Advisory Board member Dr. Brent Goodman presented this lecture on Sjogren’s at our Dysautonomia International’s 2019 Conference.by
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Exciting news! Dysautonomia International successfully advocated for a unique ICD-10 code for POTS in the US for the first time! US clinicians can begin using the new POTS code, G90.A, as of October 1, 2022 – just in time for our 10th Annual Dysautonomia Awareness Month campaign.

The International Classification of Diseases (ICD) is an agreed upon terminology for medical conditions created by the World Health Organization, a branch of the United Nations. Each country can choose to adopt the ICD, and make some edits to the terminology to be used in their country. ICD-10 is the current version and the 10th revision of the ICD since its inception in 1909.

POTS historically did not have its own unique ICD-10 code. It was listed as a synonym under I49.8 “Other specified cardiac arrhythmias” along with numerous other medical conditions like Brugada syndrome, re-entrant atrioventricular tachycardia, ectopic rhythm disorder and other arrhythmias. POTS, however, is not considered to be an arrhythmia. The tachycardia (fast heart beat) seen in POTS is a normal sinus rhythm. POTS being lumped together with so many other medical conditions made epidemiology, health care utilization, and other electronic medical records research impossible.

This is why Dysautonomia International set out to get POTS its own diagnostic code in the ICD a few years ago. Dysautonomia International Medical Advisory Board member Dr. Jeffrey Boris led the charge, along with Dysautonomia International President Lauren Stiles.

First, they obtained POTS a new ICD-11 code from the World Health Organization, which you can read here. ICD-11 is not implemented yet, but it has been adopted by all World Health Organization member countries and implementation should occur over the next few years. In the US, ICD-11 implementation may begin in the 2025-2027 time frame, if we’re lucky.

While we wait for ICD-11 to be implemented, we pursued an ICD-10 code change in the US, the country with the most number of POTS research centers and POTS aware clinicians. Dr. Boris and Lauren presented before a US Center for Disease Control committee last year, and the committee just issued their decision to approve a unique ICD-10 code for POTS at G90.A. This places POTS in the ICD-10 section with other autonomic nervous system disorders, where it should have been all along. This new ICD-10 code goes into effect in the US as of October 1, 2022.

The implementation of a unique ICD-10 code for POTS in the US will facilitate better research studying the epidemiology of POTS, the evolution of the illness over time, use of health care resources, disability determinations and much more. But… that only works if US clinicians start using the code, so please let your doctors and other medical professionals know about this code change! Let the billing office staff know too, since they do most of the coding. You can give them this Provider Letter.

We are having conversations with POTS experts in other countries to determine if it is feasible to pursue ICD-10 changes in other countries at this time, as each country has its own lengthy legal process to change the coding system. We are also reviewing the ICD-10 and proposed ICD-11 with our Medical Advisory Board to determine if there are other autonomic disorders that are missing unique ICD codes. If any are missing that would meet the criteria for a unique code, we will pursue unique ICD codes for those diagnoses as well. Thankfully, most autonomic disorders already have unique ICD codes.

Having a unique ICD-10 code for POTS in the US is a huge victory for the dysautonomia patient community! This will help us get recognized as a large patient population that is currently being greatly underserved by the healthcare system.

We have many other advocacy projects in progress. You can help Dysautonomia International do even more advocacy that benefits our patient community by making a contribution to support this important work at CureDys.org. Even if you can’t contribute financially, you can still be part of our advocacy efforts by signing up for our email list.

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Hot of the presses! We are excited to announce that two journal articles summarizing the findings of the first National Institutes of Health (NIH) Postural Orthostatic Tachycardia Syndrome (POTS) Research Workshop, written by 30 of the top POTS experts including Dysautonomia International representatives, are now available. Part 1 summarizes the current state of scientific knowledge and POTS clinical care. Part 2 summarizes the top priorities for POTS clinical care and research, and calls for the NIH to fund an additional $50 million in POTS research over the next five years. (links below)

Persuading the NIH to host this workshop was the result of several years of Congressional advocacy by dedicated Dysautonomia International patient, caregiver and physician volunteers. As a result of our advocacy efforts, Congress encouraged NIH to host a POTS research workshop and directed the NIH to report back to Congress on:
(1) the current state of POTS research;
(2) priority areas of focus for future POTS research through 2025;
(3) ongoing and upcoming efforts by NIH to advance the scientific understanding of POTS; and
(4) an estimate of the level of funding that would be needed to achieve the above stated objectives.

The workshop took place on June 29, 2019 at NIH headquarters in Bethesda, Maryland the morning after Dysautonomia International’s 2019 Conference in Philadelphia, which most of the POTS experts had participated in. After presentations from several speakers, including Dysautonomia International President Lauren Stiles, and Dysautonomia International Medical Advisory Board members Dr. Satish Raj and Dr. Steven Vernino, who co-chaired the NIH meeting, and other experts, the attendees created recommendations for the NIH on what POTS research priorities NIH should support in the next five years.

The NIH staff summarized the impressive list of attendees and NIH’s perspectives on the workshop on the NIH website, and in a report to Congress from NIH Director Dr. Francis Collins. The POTS experts wrote their own summary, in the form of two journal articles, to further elaborate on their findings from the workshop and make recommendations to Congress and the NIH:
Part 1 – Postural orthostatic tachycardia syndrome (POTS): State of the science and clinical care from a 2019 National Institutes of Health Expert Consensus Meeting (this article summarizes the current state of scientific knowledge on POTS and the state of clinical care)
Part 2 – Postural orthostatic tachycardia syndrome (POTS): Priorities for POTS care and research from a 2019 National Institutes of Health Expert Consensus Meeting (this article summarizes gaps in scientific knowledge and clinical care, and identifies the top POTS research priorities for the next five years).

“While everything we know about POTS and everything we need to do for POTS patients cannot fit into two journal articles, these articles reflect an incredible collection of knowledge about POTS, and lay out the blueprint for the hard work that we must do to advance POTS research and clinical care.” noted Lauren Stiles, Dysautonomia International President and co-founder.

Dr. Satish R Raj Professor of Cardiac Sciences at the Libin Cardiovascular Institute and the Cumming School of Medicine at the University of Calgary, and co-chair of the NIH meeting explained, “[t]his is an important milestone for POTS research. We hope that the resulting recommendations that resulted from this workshop will be implemented by the NIH and other research funding agencies around the world.”

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Dysautonomia International is proud to be the voice of our patient community in the halls of government. Our strategic advocacy efforts are designed to affect change that will create a better future for people living with POTS and other forms of dysautonomia. We are able to do this advocacy work because of the support of individuals like you. Please consider making a contribution at DysautonomiaInternational.org/donate today to support our ongoing advocacy, research, and education efforts. We are making progress, but with your support, we can do even more!

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We’re putting the volunteer spotlight on Kim DiBona this month. Kim’s started volunteering for Dysautonomia International after her daughter’s diagnosis. “The two and a half year diagnostic delay in getting diagnosed, the hundreds of tests and appointments, the 25 doctors who couldn’t figure out what was wrong… I couldn’t sit back and let other families go through that.”

Kim has volunteered her time on our Patient & Caregiver Advisory Board since the launch of Dysautonomia International in 2012. “There was only one Facebook support group back then. I hosted a few support group meetings at the beginning, and everyone was happy to be in a room with people that get it.”

She co-hosted her first fundraiser in 2013 with Dysautonomia International founder Lauren Stiles and other volunteers at the Stone Creek Inn, East Quogue, NY. “At first I was afraid to ask for donations and gift basket items, but after the first donation came to my house, it inspired me to keep going. So many family and friends donated.  Since then, it lit the fire for me to continue to hold annual fundraisers where we live in New Jersey.”

The thing that touches Kim the most is bringing the patients and their families together. “One specific moment I hold dear to me is connecting with a family from Panama at the annual conference. Knowing you make a difference in someone else’s life just by volunteering is something you keep with you forever. Those memories mean so much because I remember each and every face, each and every hug.  Another special moment was the first annual fundraiser I held in New Jersey, seeing my daughter look at the room full of people supporting her and other dysautonomia patients like her, and the money we raised for research. It gave her hope and showed her that lots of people cared.”

Kim is also very active and helps moderate Dysautonomia International’s New Jersey Support Group on Facebook. She is always so kind and helpful to other members in the community. The message that Kim would like to give to the dysautonomia community is, “[k]eep the faith, have hope.  We have come so far in these past eight years. There is so much more to be done, and we could use more volunteers. Every little bit helps. Educating doctors, small or large fundraisers, the resources are here to help you. Some people have asked how I do what I do. My response is, I am just a mom on a mission and there are lots of us.”

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