April 2020 – as we’re settling into our new “normal” life during the pandemic, the team at Uninvisible Pod and our Spoonie community has been busy from home! As an immuno-compromised community, now more than ever, it is important for us to support each other and be vocal about what we’re going through. Now is not the time to be silent! To that point, our guests this month were absolutely vocal and honest with us, and we hope you find their stories inspirational for whatever you are going through.
Ahh April, what a month! We spoke with Chris Abdullahi of The Sound of Sickle about sickle cell awareness and blood donation; Dr. Madan Kandula about sleep disorders and life as an ENT; Syren Nagakyrie of Disabled Hikers about the importance of connection and community when living with invisible illness; Dr. Jessica Shepherd OB/GYN about destigmatizing conversations about women’s health; and Lorna Alexis of Cystum of Curves about life with PCOS and becoming a #BodyPositive advocate.
Save these for a car trip, lounging day of outdoor social distancing, or wherever you typically listen to our podcasts. April is most definitely NOT a month to be missed!
Chris Abdullahi is the founder of The Sound of Sickle, a non-profit organization that raises awareness of sickle cell diseases (SCD) and blood donations in the UK. He has spoken about sickle cell awareness on various platforms, including Google, Facebook, Guys and St. Thomas’ Hospital, and the BBC, and works closely with the NHS Blood Donations team to curate events and sign up new black blood donors. He also lives with hemoglobin SS disease, the most common and severe type of sickle cell — which means he inherited copies of the hemoglobin S gene from both of his parents. In this interview, he sat down with Lauren shortly after coming out of a ‘crisis’, which is the term used to describe the bouts of intense pain that those living with SCD can often experience.
Otolaryngologist Dr. Madan Kandula is considered Wisconsin’s thought leader for breathing and snoring/sleep apnea solutions. An expert in ear, nose, and throat medicine, his knowledge of healthy breathing has propelled him — alongside his wife, who is an audiologist — to found ADVENT, the largest independent ENT practice in Wisconsin, where they provide their patients with solution-based treatments without the uncertainty, dismissive attitude, and long waits that are often the norm in medical settings. As such, he routinely treats patients who have had unsuccessful results from previous surgeries, and is often able to correct breathing issues with less invasive procedures. Along with his many other achievements, he is the first surgeon to perform balloon sinuplasty in Wisconsin, and the developer of a new model of care to evaluate The Breathing Triangle. In this episode, we dug deep into sleep apnea and related issues.
Syren Nagakyrie (she/they) is the founder of Disabled Hikers, a community and resource for those living with disabilities (and their loved ones) that enables and empowers them to access nature. An activist for accessibility and inclusion, they come from a working-class background and have struggled to retain adequate healthcare for most of their life. Syren lives with multiple invisible conditions, including hypermobile Ehlers-Danlos Syndrome (hEDS), dysautonomia (postural orthostatic tachycardia syndrome, or POTS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — all of which cause them to live in chronic pain. They also live with clinical depression and complex PTSD. The Disabled Hiker’s Guide to Western Washington and Oregon: Outdoor Adventures Accessible by Car, Wheelchair, and Foot is being published by Falcon Guides in 2021.
Dr. Jessica Shepherd is an OB/GYN and women’s health expert, founder of Her Viewpoint (an online women’s health forum with a focus on addressing what she calls “below the belt” topics in a stigma-free setting), and the host of the new wellness podcast Breathe + Bloom. As an OB/GYN, she practices in Dallas and was previously at the University of Illinois at Chicago, where she served as Director of Minimally Invasive Gynecology. She also gives lectures on fibroids, myomectomies, and women’s health issues around the world. Her writing has been featured in numerous publications, including Woman’s Day, Women’s Health, Self, Family Circle, Parents, Essence, and WebMD; she is a national speaker for Poise, Allergan, and other brands promoting the discussion of women’s health issues. As a member of the board of the Women’s Health Foundation as well as the Multicultural Leadership Committee of the American Heart Association, she uses her expertise to help women understand their health conditions and how to address them appropriately. As we dig into in this interview, she understands all too well that women’s health issues are not discussed openly enough, and that these conversations need to expand for us to remove the stigma of sexual and reproductive health concerns.
Lorna Alexis is the influencer, model, blogger, and creator of Cystum of Curves. An advocate living with PCOS (polycystic ovarian syndrome), the word “cystum” is derived from the word cyst, a characteristic of the syndrome. PCOS is known to cause weight gain and make that weight even harder to lose — so instead of letting PCOS get her down, Lorna decided to use her diagnosis as a platform for inspiration and motivation for others as she navigates the world…with curves. In this honest, revealing, and intimate episode, Lorna addresses that #BodyPosi life, how she contracted Type 2 diabetes as a direct result of living with PCOS, how she manages a healthy lifestyle, and why #RepresentationMatters.