Exercise With POTS

We're glad to see the Today Show raising awareness about thanks to Olympic medalist 🥇Katie Ledecky🥇 sharing her POTS story in her recent memoir. While the article notes that Katie was diagnosed fairly quickly and her POTS symptoms are under control with the treatment approaches she uses, the article also notes that POTS patients often experience long diagnostic delays and that these treatments don't work for everyone, citing Dysautonomia International's Big POTS Survey research study, as well as content from our Medical Advisory Board members at Johns Hopkins and University of Calgary.

This is exactly why Dysautonomia International has been funding millions of dollars in POTS research, to try to find more effective treatments for POTS, which is quite debilitating for most people living with it. 100% of donations to our POTS Research Fund go directly to innovative research grants. You can contribute at www.CurePOTS.org

Read the Today story here: https://www.today.com/health/disease/katie-ledecky-pots-rcna165216

If you want to learn more about POTS, check out these Dysautonomia International resources:

💙 What is POTS? 4 min animated video:
vimeo.com/187404694

💙 POTS Summary Page:
dysautonomiainternational.org/POTS

💙 POTS Treatment Essentials:
dysautonomiainternational.org/pdf/POTSTreatmentEssentials.pdf

💙 Quick Links to Patient Education Resources:
dysautonomiainternational.org/pdf/DIQuickLinks.pdf

Snoop's face watching Katie Ledecky win another gold in the 1500m provided for an irresistible .

In case you haven't heard, POTS IS NOT CAUSED BY DECONDITIONING! The NIH consensus diagnostic criteria actually excludes tachycardia solely caused by deconditioning from the definition of POTS. While deconditioning can make POTS symptoms worse, just like it can make many other diseases worse, it's not the root cause of POTS.

New research finds that COVID-19 infects and significantly damages autonomic nerves before the virus infects the blood. This may explain why a majority of people with Long COVID develop POTS and other forms of dysautonomia, and why people with pre-existing POTS and other dysautonomias may experience a worsening of their autonomic symptoms during and after a COVID infection.

The researchers also found that the virus infects sensory neurons, the spinal cord, and brain regions with significant connectivity to the peripheral nervous system. The researchers also found evidence that the virus can spread to the central nervous system through the peripheral nervous system.

You can read the research paper, which is quite technical, here: https://www.mdpi.com/1422-0067/25/15/8245

Dysautonomia International board members suspected COVID-19 may be infecting the autonomic and sensory neurons since the early days of the pandemic, which is why we advocated for the NIH RECOVER study (the US government's nearly $2B effort to study Long COVID) to collect autonomic and sensory neurons (also known as ganglia) during the RECOVER autopsy study. After numerous meetings, we were able to get RECOVER's agreement to do that. Unfortunately, RECOVER declined our request to also collect vagus nerve samples, despite research from outside of RECOVER demonstrating that the vagus nerve can be infected, that the vagus nerve may be a route of viral spread from the periphery to the central nervous system, and evidence that many Long COVID patients have symptoms suggestive of vagus nerve impairment.

We can't wait for the government to figure out dysautonomia and find more effective treatments. That is why Dysautonomia International is funding research on POTS, other forms of dysautonomia, and Long COVID associated dysautonomia - research aimed at identifying more effective treatments for millions of people suffering from autonomic disorders as soon as possible. You can help support our innovative research program by making a contribution at www.CureDys.org or hosting a Facebook fundraiser at facebook.com/fund/DysautonomiaInternational

I hope that even in difficult times, you can find ways to make others feel valued and understood through acts of kindness and empathy. As Maya Angelou eloquently put it, 'People will forget what you said and did, but they will never forget how you made them feel.'

🤣Especially here in the south! 🧂💧

University of Calgary researchers have published an important new paper on the biological mechanisms of POTS. Hyperventilation upon standing is a common finding in POTS. Historically, some doctors incorrectly attributed this to anxiety, while other POTS researchers thought it was due to a problem with peripheral nerve receptors in the heart and neck triggering hyperventilation. But the University of Calgary researchers did detailed human and mouse studies that confirmed reduced blood flow to the brain is what causes an increase in sympathetic nerve activity and an increased rate of respiration (hyperventilation) in POTS. This is an important finding, because it means that treatments that improve cardiac stroke volume and increase blood flow to the brain are the appropriate treatment for hyperventilation in POTS.

We'll be hosting a webinar with the Univ of Calgary researchers to discuss the new research findings and implications for POTS treatment soon. Stay tuned to our social media channels for the webinar announcement, or sign up for our email list to receive an email when webinar registration opens: dysautonomiainternational.org/email

Read the research paper here: https://www.sciencedirect.com/science/article/pii/S2452302X24001840

Christina Applegate's 13-year-old daughter Sadie diagnosed with POTS: 'I was in a lot of pain' Christina Applegate's 13-year-old daughter Sadie has shared that she has been diagnosed with postural orthostatic tachycardia syndrome.

New case report on the use of Rituxan in seronegative autoimmune autonomic neuropathy (SAAN) and a review of prior Rituxan case reports in SAAN and AAG.
www.ncbi.nlm.nih.gov/pubmed/30468952

EXCITING RESEARCH NEWS! Researchers at the Medical University of South Carolina have identified kallikrein genetic variants in about 1/3 of individuals with hypermobile Ehlers-Danlos syndrome. The also replicated one of the variants seen in hEDS patients in a mouse model, and the mouse displayed characteristics similar to hEDS. hEDS is the most common form of EDS, and the type most often associated with POTS and other forms of dysautonomia.

Kallikreins are a family of proteases, enzymes that break apart proteins. They play a role in connective tissue, blood pressure regulation, immune function and many other important roles throughout the body.

Importantly, the researchers point out that this discovery does not change clinical care at the moment for hEDS patients who may have kallikrein variants. They also emphasize that patients who do not have kallikrein variants should not be denied an hEDS diagnosis if they otherwise meet criteria for hEDS. This initial discovery will certainly lead to much more research on the role of kallikreins in hEDS and in related conditions like POTS and MCAS, and will hopefully lead to faster diagnosis and more effective treatment options.

Read the journal article pre-print here: https://www.researchsquare.com/article/rs-4547888/v1?redirect=/article/rs-4547888 Please note, pre-prints have not been peer-reviewed yet, but are in the process of being reviewed. It is common to issue pre-prints for groundbreaking new research while awaiting the lengthy peer-review process.

We are thrilled to have this research team presenting several EDS research studies, including these genetic findings, at our conference in Chicago, June 28-30! In person and virtual registration options are available at DysConf.org

Join us Monday, May 6th at 7pm EST for an interactive discussion with cardiologist Dr. Alexis Cutchins, who has been studying vascular compression syndromes in patients at her Emory University Clinic. After a brief research update, audience members will be able to ask questions and Dr. Cutchins will answer as many questions as possible within the time allotted.

If you can't attend the live broadcast, everyone who registers for the webinar will receive a copy of the recording via email a few weeks after the event. Register here: https://bit.ly/DysWebinar_May6

Duke University researchers are asking people diagnosed with POTS or nOH to complete this brief survey about your experiences with compression garments to help them understand the needs of our patient community.
https://redcap.duke.edu/redcap/surveys/?s=RW8L7E7LKLNDALRM

Dr. Grubb and colleagues recently published this review of the literature on autoimmunity in and . They highlight the mounting evidence that autoimmunity plays a role in both conditions, the use of immune modulating agents to treat these conditions, and the need for more research on this topic.

Read the article at https://www.mdpi.com/2075-4426/14/4/435

Dysautonomia International has been at the forefront of funding research on the role of autoimmunity in POTS and the use of immune modulating treatments. We're also funding research on immunotherapy in associated with severe gastrointestinal dysmotility. You can donate to support this important research at CureDys.org.

Dr. Grubb and other experts will be presenting on this and many other research topics during our 12th Annual Conference this summer in Chicago. Details at DysConf.org.

April is . Sjögren’s is the second most common cause of autonomic neuropathy, and can present with a wide range of autonomic dysfunction ranging from mild dry eyes all the way to severe autonomic failure.

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Let’s have some fun! Give us your best "dysautonomia" versions of popular movies. Here are a few of our favorites: Driving Miss Dizzy, Harry Potsie and the Goblet of Electrolytes, and Fifty First Faints. And go...

In this case report from Penn State, doctors describe significant improvement in chronic pain and the ability to function after immunotherapy in a patient who had been diagnosed with hypermobile EDS, POTS, MCAS, gastroparesis, CRPS, small fiber neuropathy and fibromyalgia. This case joins a growing list of case reports and case series documenting improvement in patients with the above conditions after immune interventions. https://onlinelibrary.wiley.com/doi/10.1002/ccr3.8431

Dysautonomia International has been funding research on antibodies, cytokines, and immune modulating treatments in POTS, EDS, GI dysmotility, Sjogren’s dysautonomia, Long COVID, and small fiber neuropathy patients, with the goal of identifying more effective treatments for these debilitating and often overlapping medical conditions. You can contribute to that research by making a donation at dysautonomiainternational.org/donate

Michael Strahan’s Daughter Isabella Says She 'Can’t Walk Without Being Lightheaded' During Chemo for Brain Tumor Isabella Strahan — the 19-year-old daughter of Michael Strahan — said she feels like every trip to the hospital since being diagnosed with a brain tumor she’s “got a different problem”

A recent study published in BMJ Public Health found that individuals with generalized joint hypermobility might face a greater risk of not fully recovering from COVID-19.

The research study involved over 3,000 participants from the COVID Symptom Study Biobank. It found that those with hypermobility were 30% more likely to experience prolonged symptoms, including feeling very tired for a long time after COVID-19 infection, a key feature of long COVID.

While the research doesn’t definitely prove that people with hypermobility are more prone to having long COVID, it opens up an important discussion on potential risks, encourages further exploration into tailored treatments, and indicates that people with hypermobility might need specific considerations in their recovery process: https://bmjpublichealth.bmj.com/content/2/1/e000478

Similar findings were featured in an article about a different study of long COVID and joint hypermobility that we shared last year and is available to read on the HMSA website: https://www.hypermobility.org/longcovid

The BMJ Public Health researchers acknowledge various limitations to their findings—including that most of the study participants were women of White ethnicity and that their analysis does not include other potentially influential factors, such as duration of symptoms, coronavirus variant, or pre-existing conditions such as Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD) that can cause symptoms that overlap with long COVID.

Researchers believe long COVID isn’t just one problem but a mix of different health issues involving the immune system, inflammation, nerve responses, breathing, and heart functions, creating various COVID symptoms together.

Dr Jessica Eccles, from Brighton and Sussex Medical School, spoke with the Guardian about the study’s findings:

“We’ve known for some time that POTS is closely associated with hypermobility. The theory is that loose connective tissue in people’s veins and arteries can cause blood to pool in their tissues, meaning the heart has to work harder to pump blood to their brains when they stand up, triggering symptoms such as palpitations and dizziness. It may be that some of these abnormalities were always there, but COVID unmasked them in a vulnerable person.” https://www.theguardian.com/society/2024/mar/19/people-with-hypermobility-may-be-more-prone-to-long-covid-study-suggests

⭐ In December 2023, The Ehlers-Danlos Society launched a survey for its DICE Global Registry participants.

The anonymous survey asks questions about experiences of COVID-19 vaccinations and infection with COVID-19.

✅ We would like as many people as possible with Ehlers-Danlos syndromes or hypermobility spectrum disorders to take part.

Members of the DICE Registry have previously been sent instructions on taking part.

➡️ If you are not a member and would like to take the survey, click here to learn more about joining today: https://www.ehlers-danlos.com/eds-global-registry/

Coat hanger pain is one of the many "invisible" symptoms that is common in individuals living with and other forms of . It's believed to be caused by poor blood flow in the large muscles of the upper back and neck. The autonomic nervous system controls blood flow throughout the body, and when it's not working properly, blood flow patterns can be disrupted resulting in muscle pain and soreness. Learn more about dysautonomia at dysautonomiainternational.org/whatisdys.

Vasovagal syncope (VVS), also known as neurocardiogenic syncope (NCS), impacts 20% of the global population. Recurrent episodes of VVS/NCS significantly impact quality-of-life and are a common reason for emergency department visits. Dysautonomia International Medical Advisory Board member Dr. Blair Grubb recently conducted a meta-analysis of 18 randomized controlled studies to investigate the efficacy of non-pharmacological interventions for preventing VVS/NCS. The analysis found that compression stockings, oral rehydration salts and increased salt intake, tilt training, physical counter pressure maneuvers, and yoga can help reduce the risk of syncope recurrence in VVS/NCS.

Read the study abstract here: https://www.autonomicneuroscience.com/article/S1566-0702(23)00073-5/abstract

Registration is now open for , Dysautonomia International's 12th Annual Conference, being held in Chicago, June 28-30, 2024! Details & registration at DysConf.org

Join us for the world's largest conference on autonomic disorders, which brings together patients, caregivers, researchers, clinicians and allies to share information on the latest research on autonomic disorders, diagnostic techniques, pharmacological and non-pharmacological treatment approaches, related medical conditions, advocacy training, and fun social activities.

Presentations from leading experts will include topics like dysautonomia, POTS, AAG, PAF, VVS, NCS, OH, OI, MSA, small fiber neuropathy, autoimmunity, EDS, MCAS, ME/CFS, Sjogren's, Long COVID and more!

This year we will offer three ways to get connected to the conference:
✅ in-person participation,
✅ live streaming, or
✅ access to recordings after the conference.

Early bird registration discounts are available until April 26th.

Thanks to generous donors to our Amelia Moore Conference Scholarship Fund, we are able to offer a limited number of scholarships to dysautonomia patients, caregivers and medical students with an economic hardship. Scholarship applications are due by March 15th and can be found on the conference website, DysConf.org, under the Details tab.

💙 Learn more about this amazing weekend at DysConf.org 💙

There's a new IRB approved research study at Vanderbilt that is seeking volunteers to fill out a survey. You must be 18 or older and have POTS. The survey should take about 10 minutes. We hope you participate in POTS research! https://redcap.link/POTSstudy