Dysautonomia International

Did you know you can find clinical trials currently enrolling related to POTS, other forms of dysautonomia, and common co-morbidities at clinicaltrials.gov? Search for your diagnosis of interest to see trial listings.

Registration for Dysautonomia International's 13th Annual Conference: Common Ground is now open at DysConf.org. Join us in Raleigh or via livestream for an incredible weekend of learning, networking, and innovation at the world's largest conference on autonomic disorders! Conference highlights include: -educational sessions taught by the leading experts -interactive discussion panels -networking events -a teen program -fun social activities for all ages -a research poster session and many research updates -a vendor fair -the opportunity to enroll in a groundbreaking POTS research study (if you meet enrollment criteria) -an Awards Dinner recognizing our volunteers and physician champions -a Continuing Medical Education course for medical professionals (extra fee) Topics that will be covered include: -POTS, OI, OH, and syncope -AAG, Sjogren's and other autoimmune dysautonomias -gastrointestinal dysmotility -autonomic and sensory small fiber neuropathies -mitochondrial dysfunction in dysautonomias -new EDS/HSD research -new cerebral blood flow research -new POTS genetic and blood biomarker research -novel approaches to expanding blood volume -and much more!!! Conference scholarship applications for individuals with an economic hardship and Physician of the Year Award nominations are open until April 1st. Register or learn more at DysConf.org.

Recent research has found as much as a spoonful of microplastics in human brain tissue, as well as in our kidneys, liver, blood vessels and other organs. The chemicals in microplastics have been associated with inflammation, cancer and other serious health concerns... the last thing we need when we're already struggling with chronic health issues like dysautonomia. What can you do to reduce your microplastics exposure? Experts recommend: -using glass or ceramic containers when heating food in the microwave -switch to glass or stainless steel water bottles -swap out plastic cutting boards for non-plastic options -choose loose leaf tea instead of mesh tea bags -swap out dishwasher pods for loose dishwashing powder or liquid -buy natural fiber clothing and sheets/blankets when possible -wash synthetic fabrics less often Read more about microplastics research and how to reduce your exposure: https://lnkd.in/gBAp_be5

University of Calgary researchers recently published a study confirming that waist high compression stockings reduce standing heart rate and improve symptoms in POTS patients, whether or not the patient was using medications. They also found that these improvements lasted several hours, but improvements wore off later in the day (although still more of an improvement than not wearing stockings). You can read the article at https://lnkd.in/gG64AktB. Experts typically recommend waist high compression stockings because a majority of the blood pooling in POTS occurs in the abdominal and upper thigh area. Compression strengths of 20-30mmHg or more are typically recommended.

Today is #RareDiseaseDay! AAG is a rare form of dysautonomia. Learn more at https://lnkd.in/eSv4BQj7

Researchers recently performed a meta-analysis on clinical trials using auricular vagus nerve stimulation to regulate inflammation. The vagus nerve is the largest autonomic nerve in the body (there are two of them, left and right) and the autonomic nervous system is the master regulator of immune function. Not surprisingly, the meta-analysis found that stimulating the vagus nerve was effetcive in reducing many different inflammatory markers in many different diseases. Read the meta-analysis at https://lnkd.in/gNBm44rW. Dysautonomia International has funded three vagus nerve stimulation studies to date in POTS and a few other studies have taken place - all of which have shown good results! Some of these studies have published journal articles, while others have been presented at our annual conference and are in the process of getting published. https://lnkd.in/gwhQV-zh https://lnkd.in/grv6UxcW https://lnkd.in/g69qPYQF https://lnkd.in/g88Ax5RH https://lnkd.in/gUuW435R You can donate to support this innovative research by making a contribution to our POTS Research Fund or Dysautonomia Research Fund at CureDys.org.

Dr. Jeffrey Boris & colleagues recently published the largest genetic study in POTS to date. Their research identified several groups of genes that were over-represented in POTS patients, which are linked to cell–cell junctions, synaptic (nerve) membranes, transporter complexes and early estrogen responses, as well as specific genes related to muscle dysfunction, microtubule dysfunction, autonomic nervous system regulation and mitochondrial activity. You can read this highly technical paper at https://lnkd.in/e8wNxubN. Additional research is needed to further explore the role of these genes in POTS and potential treatment approaches. If you are curious if you have any of the genetic variants discussed in this study, we encourage you to discuss this study with your doctor, but keep in mind that whole exome sequencing remains very expensive, is often not covered by insurance, and is not considered part of routine clinical care for POTS at this time. This may change as more genetic research is published in the future. Dysautonomia International has been funding genetic research studies on POTS and other dysautonomias at Johns Hopkins and Stony Brook University, which you can support by making a contribution at CureDys.org.

Dr. Jeffrey Boris & colleagues recently published the largest genetic study in POTS to date. Their research identified several groups of genes that were over-represented in POTS patients, which are linked to cell–cell junctions, synaptic (nerve) membranes, transporter complexes and early estrogen responses, as well as specific genes related to muscle dysfunction, microtubule dysfunction, autonomic nervous system regulation and mitochondrial activity. You can read this highly technical paper at https://lnkd.in/e8wNxubN. Additional research is needed to further explore the role of these genes in POTS and potential treatment approaches. If you are curious if you have any of the genetic variants discussed in this study, we encourage you to discuss this study with your doctor, but keep in mind that whole exome sequencing remains very expensive, is often not covered by insurance, and is not considered part of routine clinical care for POTS at this time. This may change as more genetic research is published in the future. Dysautonomia International has been funding genetic research studies on POTS and other dysautonomias at Johns Hopkins and Stony Brook University, which you can support by making a contribution at CureDys.org.

Are you a college student who is passionate about helping people with dysautonomia and looking to gain professional experience? Apply for one of our 2025 internships! Internships may be performed remotely and scheduling is flexible. Internship descriptions and application instructions at https://lnkd.in/ex_b2BWP Please only apply for the internship you are most interested in. If you have a second or third choice, please indicate that in your cover letter.

Happy Valentine's Day! Send one of these cute dysautonomia valentines to someone you love today to help raise awareness. If you love someone with dysautonomia, you can donate in their honor today to support dysautonomia research at https://CureDys.org