S2E5 - S2E5: Sarah's Story

S2E7 - S2E7: Cate's Story

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/conference2026]https://www.dysunderstood.com/blog/corristory [https://www.dysunderstood.com/blog/corristory]https://www.dysunderstood.com/blog/corristory2 [https://www.dysunderstood.com/blog/corristory2] Find Us on Instagram: Cate @catesiniscalchi [https://www.instagram.com/catesiniscalchi/] https://www.instagram.com/corridefazio/Ella @ellaeastin [https://www.instagram.com/ellaeastin/], Dysunderstood @dysunderstood [https://www.instagram.com/dysunderstood/] TikTok: @catesiniscalchi [https://www.tiktok.com/discover/cate-siniscalchi] @dysunderstood [https://www.tiktok.com/@dysunderstood] We want to hear your story! Contact us: hello@dysunderstood.com Thank you to Nurse Mates [https://www.nursemates.com/en/ella-eastin.html] 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. [https://www.dysunderstood.com/s2e6transcript]

S2E6 - S2E6: Corri's Story

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 [https://www.dysunderstood.com/blog/corristory] Reflection: Mental Health and Dysautonomia [https://www.dysunderstood.com/blog/corristory2] Find Us on Instagram: Corri @corridefazio [https://www.instagram.com/corridefazio/] and @DancingwithDysautonomia [https://www.instagram.com/dancingwithdysautonomia/#], Ella @ellaeastin [https://www.instagram.com/ellaeastin/], Dysunderstood @dysunderstood [https://www.instagram.com/dysunderstood/] TikTok: @dysunderstood [https://www.tiktok.com/@dysunderstood] We want to hear your story! Contact us: hello@dysunderstood.com Thank you to Nurse Mates [https://www.nursemates.com/en/ella-eastin.html] 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. [https://www.dysunderstood.com/s2e6transcript]

S2E5 - S2E5: Sarah's Story

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 [https://podcasts.apple.com/us/podcast/trailer-the-retrievals-season-1/id1691599042?i=1000617917143] Thank you to Nurse Mates for your continued support of Dysunderstood [https://www.dysunderstood.com/] and The Dysunderstood Podcast. [https://www.dysunderstood.com/podcast] Discount Code: ELLA20 Find us on instagram @dysunderstood [https://www.instagram.com/dysunderstood/]. For a transcript of the episode, click here [https://www.dysunderstood.com/s2e5transcript] or visit: https://www.dysunderstood.com/s2e5transcript [https://www.dysunderstood.com/s2e5transcript]

S2E4 - S2E4: James's Story

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 [https://www.instagram.com/supercoxy/?locale=uken1&hl=am-et], Ella @ellaeastin [https://www.instagram.com/ellaeastin/], Dysunderstood @dysunderstood [https://www.instagram.com/dysunderstood/] TikTok: @dysunderstood [https://www.tiktok.com/@dysunderstood] We want to hear your story! Contact us: hello@dysunderstood.com Thank you to Nurse Mates [https://www.nursemates.com/en/ella-eastin.html] 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. [https://www.dysunderstood.com/s2e4transcript]

S2E3 - S2E3: Olga's Story

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 [https://www.instagram.com/olga.potsiefit/] Ella @ellaeastin [https://www.instagram.com/ellaeastin/] Dysunderstood @dysunderstood [https://www.instagram.com/dysunderstood/] TikTok: @dysunderstood [https://www.tiktok.com/@dysunderstood] CALLING ALL PARENTS WITH CHRONIC ILLNESS! We want to hear your story! Contact us: hello@dysunderstood.com Thank you to Nurse Mates [https://www.nursemates.com] 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. [https://www.dysunderstood.com/s2e3transcript]