The Dysunderstood Podcast

Ella sits down with chronic illness advocate Cate Siniscalchi, who has spent over a decade navigating a complex and often misunderstood medical journey. Living with POTS, EDS, SMA, MALS, Nutcracker Syndrome, SIH, MCAS, and more, Cate shares what it’s like to fight for answers in a system that doesn’t always listen. They discuss intense hospitalizations, medical disbelief, family dynamics, and the long road to diagnosis filled with procedures and uncertainty. Through it all, Cate reflects on the power of sharing her story to raise awareness and help others feel less alone. After more than 10 years of advocating for herself, Cate continues to be a voice for the chronic illness community. Keep fighting, friends. Cate's other Dysunderstood contributions: Dysunderstood Conference Guest https://www.dysunderstood.com/blog/corristoryhttps://www.dysunderstood.com/blog/corristory2 Find Us on Instagram: Cate @catesiniscalchi Ella @ellaeastin, Dysunderstood @dysunderstood TikTok: @catesiniscalchi @dysunderstood We want to hear your story! Contact us: [email protected] Thank you to Nurse Mates for supporting our community, providing compression and comfort footwear. DISCOUNT CODE: ELLA20- check our website for updated discount codes. Some relevant definitions: Ehlers-Danlos Syndrome (EDS): A group of genetic connective tissue disorders affecting collagen, leading to joint hypermobility, fragile skin, and tissue instability. Superior Mesenteric Artery Syndrome (SMA): A rare condition where the superior mesenteric artery compresses the duodenum, causing symptoms like early fullness, nausea, vomiting, abdominal pain, and weight loss. Median Arcuate Ligament Syndrome (MALS): A condition where the median arcuate ligament compresses the celiac artery, leading to abdominal pain (often after eating), weight loss, and digestive symptoms. Nutcracker Syndrome: A vascular condition where the left renal vein is compressed (commonly between the aorta and superior mesenteric artery), causing flank pain, hematuria, and pelvic congestion. Spontaneous Intracranial Hypotension (SIH): A condition caused by a cerebrospinal fluid leak, leading to low pressure in the brain and severe positional headaches. Mast Cell Activation Syndrome (MCAS): A disorder where mast cells inappropriately release inflammatory mediators, causing symptoms like flushing, allergic-type reactions, GI issues, and cardiovascular symptoms. For a transcript of this episode, click here.

Corri, a returning community member talks about how POTS has led her to reimagine movement, creativity, and self-compassion. She opens up about her evolving relationship with dance, how art became a new outlet for healing, and why she’s pursuing a future in kinesiology and physical therapy to help others living with chronic illness. She is the creative behind Dancing with Dysautonomia, her platform to advocate for this patient population. Together, Ella and Corri explore: what it means to stay connected to your passions while adapting to a changing body finding balance between advocacy and rest learning to let go of comparison. Her other Dysunderstood contributions: Corri's Story: Dancing with Dysautonomia Reflection: Mental Health and Dysautonomia Find Us on Instagram: Corri @corridefazio and @DancingwithDysautonomia, Ella @ellaeastin, Dysunderstood @dysunderstood TikTok: @dysunderstood We want to hear your story! Contact us: [email protected] Thank you to Nurse Mates for supporting our community, providing compression and comfort footwear. DISCOUNT CODE: ELLA20 Some relevant definitions: Postural Orthostatic Tachycardia Syndrome (POTS)- A clinical diagnosis where patients present with excessive increase in heart rate upon assuming upright posture or physical activity like dizziness and palpitations. (Adult diagnostic criteria requires 30 bpm heart rate change when going from supine to upright position) For a transcript of this episode, click here.

Meet Sarah- she’s navigating life with POTS, MCAS, and Autism. She has entrenched herself in advocacy and the disability community, providing many recommendations to learn more about bias and the medical system. Topics we discuss include appointment fatigue, fat phobia, chronically ill women/minorities and more. Tune in to hear her story, approach to living with chronic illness, and recommendations for sources of education, community and joy! Sarah's recommendations for the disability and chronic illness community, highlighting creators and resources to follow: Nina Tame (@nina_tame), Imani Barbarin (@crutches_and_spice), Shane Burcaw (@shane_burcaw), Tiffany Hammond (@fidgets.and.fries), Open Future Learning (@open_future_learning), as well as the Maintenance Phase podcast and Aubrey Gordon’s work—including her books and the documentary Your Fat Friend—as resources for understanding anti-fat bias and its impacts. Podcast recommendation re: women and pain in the medical system- The Retrievals Podcast Thank you to Nurse Mates for your continued support of Dysunderstood and The Dysunderstood Podcast. Discount Code: ELLA20 Find us on instagram @dysunderstood. For a transcript of the episode, click here or visit: https://www.dysunderstood.com/s2e5transcript

James, our first male patient guest talks about his experience with Long COVID POTS, his perspective changes and managing life with a great sense of humor in the face of disabling illness. James insightfully provides several metaphors to describe his experience. Topics: Connecting with other patients and the power of strangers with shared experiences Impact of Long COVID, POTS on relationships Challenges faced, misconceptions of Long COVID patients Find Us on Instagram: James @supercoxy, Ella @ellaeastin, Dysunderstood @dysunderstood TikTok: @dysunderstood We want to hear your story! Contact us: [email protected] Thank you to Nurse Mates for supporting our community, providing compression and comfort footwear. Some relevant definitions: Long COVID (LC)- A clinically diagnosed condition characterized by persistent symptoms and long-term health issues following a COVID-19 infection; also known as post-acute sequelae of SARS-CoV-2 (PASC). Postural Orthostatic Tachycardia Syndrome (POTS)- A clinical diagnosis where patients present with excessive increase in heart rate upon assuming upright posture or physical activity like dizziness and palpitations. (Adult diagnostic criteria requires 30 bpm heart rate change when going from supine to upright position) For a transcript of this episode, click here.

Olga, a proud mom of two with POTS, openly shares her journey to diagnosis, the challenges of balancing parenthood and chronic illness. She discusses the small victories that have helped her regain some strength and control over her life with an unpredictable condition. Her conversation with Ella touches on navigating healthcare, talking to children about chronic illnesses (including role playing emergency scenarios), and fostering and accepting support while living with a chronic condition. Topics: Adjustments in lifestyle, medications, and the use of mobility aids. Navigating healthcare challenges, advocating for oneself, and finding a supportive medical team. Impact of POTS on her family, including her children’s reactions. Managing symptoms, including the use of compression socks and medication. Shifts in mindset around rest, control, and giving oneself grace. Advice for newly diagnosed individuals and caregivers. Find Us on Instagram: Olga @olga.potsiefit Ella @ellaeastin Dysunderstood @dysunderstood TikTok: @dysunderstood CALLING ALL PARENTS WITH CHRONIC ILLNESS! We want to hear your story! Contact us: [email protected] Thank you to Nurse Mates for supporting our community, providing compression and comfort footwear. Get 20% off ANY purchase using code EE2024. Some relevant definitions: Postural Orthostatic Tachycardia Syndrome (POTS)- A clinical diagnosis where patients present with excessive increase in heart rate upon assuming upright posture or physical activity like dizziness and palpitations. (Adult diagnostic criteria requires 30 bpm heart rate change when going from supine to upright position) Long COVID (LC)- A clinically diagnosed condition characterized by persistent symptoms and long-term health issues following a COVID-19 infection; also known as post-acute sequelae of SARS-CoV-2 (PASC). Orthostatic Intolerance (OI)- A clinical condition where abnormal symptoms are brought on by quiet, upright posture, often alleviated by lying down. Symptoms include abnormal heart rate increase and/or blood pressure decreases, leading to dizziness and possibly fainting. Beta-Blockers- a class of drugs that prevent the stimulation of the adrenergic receptors responsible for increased cardiac action and are used to control heart rhythm, and in some cases, reduce high blood pressure. For a transcript of this episode, click here.

Ella talks with Dr. Bruce Feldstein, a former emergency medicine physician who, after a disabling injury, transitioned into spiritual care at Stanford as a chaplain. They discuss themes of identity, the desire for control, and navigating life's uncertainties. Ella also shares her journey of acquiring a chronic illness, the motivation behind the Dysunderstood platform, and the importance of community, acceptance, and resilience in the face of unexpected life changes. Find Us on Instagram: Ella @ellaeastin Dysunderstood @dysunderstood TikTok: @dysunderstood Thank you to Nurse Mates for supporting our community. Get 20% off ANY purchase using code EE2024. For a transcript of this episode, click here. Contact us: [email protected] or reach out here Some relevant definitions: Postural Orthostatic Tachycardia Syndrome (POTS)- A clinical diagnosis where patients present with excessive increase in heart rate upon assuming upright posture or physical activity like dizziness and palpitations. (Adult diagnostic criteria requires 30 bpm heart rate change when going from supine to upright position) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)- a chronic illness marked by severe, unexplained fatigue lasting over six months, unrefreshing sleep, cognitive impairment ("brain fog"), and post-exertional malaise (symptoms worsening after activity). The diagnosis is clinical, often following criteria like the 2015 Institute of Medicine (IOM) guidelines, which require the presence of fatigue, post-exertional malaise, unrefreshing sleep, and either cognitive impairment or orthostatic intolerance. There is no definitive test, and treatment focuses on symptom management. Long COVID (LC)- A clinically diagnosed condition characterized by persistent symptoms and long-term health issues following a COVID-19 infection; also known as post-acute sequelae of SARS-CoV-2 (PASC). Low-Dose Naltrexone (LDN)- A medication used to modulate the immune system and potentially treat chronic pain and autoimmune conditions. Orthostatic Intolerance (OI)- A clinical condition where abnormal symptoms are brought on by quiet, upright posture, often alleviated by lying down. Symptoms include abnormal heart rate increase and/or blood pressure decreases, leading to dizziness and possibly fainting.

Season 2's first community story is shared by Samantha Pearson, a Stanford University swimmer diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and long COVID after experiencing prolonged symptoms post-COVID infection. Sam shares her journey through the onset of debilitating symptoms, challenges with diagnosis, and her eventual path to finding answers. We discuss the importance of patient advocacy, mental health struggles, and how chronic illness has reshaped Sam's athletic career and perspective on life. Sam is now contributing as a committee member of Dysunderstood to raise awareness and elevate voices of those affected by these conditions. Find Us on Instagram: Sam @samanthaapearson Ella @ellaeastin Dysunderstood @dysunderstood TikTok: @dysunderstood Thank you to Nurse Mates for supporting our community. Get 20% off ANY purchase using code EE2024. Some relevant definitions: Mast Cell Activation Syndrome (MCAS)- A condition where mast cells inappropriately release chemical mediators, causing multisystem symptoms affecting organ systems such as gastrointestinal, cardiovascular, and respiratory. Postural Orthostatic Tachycardia Syndrome (POTS)- A clinical diagnosis where patients present with excessive increase in heart rate upon assuming upright posture or physical activity like dizziness and palpitations. (Adult diagnostic criteria requires 30 bpm heart rate change when going from supine to upright position) Long COVID (LC)- A clinically diagnosed condition characterized by persistent symptoms and long-term health issues following a COVID-19 infection; also known as post-acute sequelae of SARS-CoV-2 (PASC). Low-Dose Naltrexone (LDN)- A medication used to modulate the immune system and potentially treat chronic pain and autoimmune conditions. Orthostatic Intolerance (OI)- A clinical condition where abnormal symptoms are brought on by quiet, upright posture, often alleviated by lying down. Symptoms include abnormal heart rate increase and/or blood pressure decreases, leading to dizziness and possibly fainting. For a transcript of this episode, click here. Contact us: [email protected]

Dr. Peter Rowe speaks about his pioneering work in identifying and treating ME/CFS, dysautonomia, and hypermobility in patients, including insights into long COVID, emphasizing his dedication to advancing medical understanding and patient care through research, advocacy, and a holistic approach to complex chronic illnesses. Want to hear more from Dr. Rowe? Dysunderstood Conference Q&A with Dr. Rowe His 170+ publications Rowe’s Research Runners Organization- created by his patients Find us all on Instagram: @dysunderstood @ellaeastin Support and stay up to date with Dr. Rowe's work: @rowesresearchrunners TikTok: @dysunderstood Contact us: [email protected] As always, thank you to our partners for making this possible. We tirelessly continue to elevate the voices of the dysunderstood. For a transcript of this episode, click here.

Diana, the first Dysunderstood community author, shares her life-changing journey, starting from a POTS and MECFS diagnosis during her collegiate swimming career, to pursuing her law degree and the ups and downs in between. Diana discusses the importance of relationships, advocating for herself, and balancing everything with her chronic illness. Want to hear more from Diana ? Find her Dysunderstood blog: "You're Not Alone" Find us all on Instagram: @dysunderstood @ellaeastin @dianahanson4 TikTok: @dysunderstood Email us: [email protected] As always, thank you to our partners for making this possible. We tirelessly continue to elevate the voices of the dysunderstood. For a transcript of this episode, click here.

Daniela, after years of managing undiagnosed illnesses during her teen years, begins her true healing process, embracing a holistic approach and the mind-body-spirit connection. We discuss challenges and triumphs of navigating life, education, and personal growth amidst ongoing chronic illness, highlighting the importance of a supportive community and personal resilience. Want more background ? Find Daniela's Full Diagnosis and Dysunderstood Story here. Find us all on Instagram: @dysunderstood @ellaeastin @daniela.kerr TikTok: @dysunderstood Daniela's Blog: For The Healing Soul Email us: [email protected] As always, thank you to our partners for making this possible. We tirelessly continue to elevate the voices of the dysunderstood. For a transcript of this episode, click here.

Christine Reed- Author, Adventurer, and Athlete with POTS- discusses her journey towards self-acceptance, empowerment through outdoor activities, her experience reaching a POTS (Postural Orthostatic Tachycardia Syndrome) diagnosis, and balancing different aspects of her identity. To read or listen to Christines's original story she shared with Dysunderstood, visit Keep Moving Forward. Find us all on Instagram: @dysunderstood @ellaeastin @ruggedoutdoorswoman TikTok: @dysunderstood As always, thank you to our partners for making this possible. We tirelessly continue to elevate the voices of the dysunderstood. For a transcript of this episode, click here.

A vulnerable discussion with Taylor about defying limits and creating new dreams in the face of new challenges- living with disability, Ehlers Danlos Syndrome and POTS. Find us all on Instagram: @dysunderstood @ellaeastin @Taylor_winnett TikTok: @dysunderstood Thank you to all of our partners for making this possible. We work tirelessly to elevate the voices of the dysunderstood. For a transcript of this episode, click here.

A heartfelt conversation with Jackie on managing motherhood, Hypermobile Ehlers-Danlos Syndrome, and POTS. To read or listen to Jackie's original story she shared with Dysunderstood, visit Awareness is the Answer. Find us all on Instagram: @dysunderstood @ellaeastin @jacqueline_mari_ TikTok: @dysunderstood Thank you to all of our partners for making this possible. We tirelessly continue to elevate the voices of the dysunderstood. For a transcript of this episode, click here.