Continuing our discussion with warrior, Marlena Chertock, born with spondyloepiphyseal dysplasia, a rare bone disorder and form of dwarfism resulting in short stature, chronic pain, arthritis, scoliosis, and more. In Part Two, listen as Marlena describes what it was like to grow up with her condition and to begin to recognize the resilience of her body. She shares her journey to identifying as disabled and her thoughts on invisible disabilities in our society. Marlena has published two works of poetry called Crumb-sized: Poems and On that one-way trip to Mars. She works as a Communications Manager, Water at the World Resources Institute, sharing research and data that helps companies, cities, and countries understand water risks and invest in solutions for a water-secure future. She also serves on the Board of Split This Rock, a nonprofit that cultivates poetry that bears witness to injustice and provokes social change, and was previously the Co-Chair of OutWrite, Washington, D.C.’s annual LGBTQ literary festival. Marlena utilizes her life experience to showcase the diversity of disability and chronic pain, highlight the importance of including disabled people in climate change planning, and imagine all bodies in the future through science fiction, speculative fiction, and crip lit (crippled literature). To learn about Marlena Chertock, go to marlenachertock.com.

Meet warrior, Marlena Chertock, who was born with spondyloepiphyseal dysplasia, a rare bone disorder and form of dwarfism resulting in short stature, chronic pain, arthritis, scoliosis, and more. Marlena grew up knowing she was different from her peers. Tune in as Marlena shares how she navigated those differences, bullying, chronic pain, and medical interventions to find her identity, advocate for important causes, and become a published author. Marlena has published two works of poetry called Crumb-sized: Poems and On that one-way trip to Mars. She works as a Communications Manager, Water at the World Resources Institute, sharing research and data that helps companies, cities, and countries understand water risks and invest in solutions for a water-secure future. She also serves on the Board of Split This Rock, a nonprofit that cultivates poetry that bears witness to injustice and provokes social change, and was previously the Co-Chair of OutWrite, Washington, D.C.’s annual LGBTQ literary festival. Marlena utilizes her life experience to shine a light on topics such as chronic pain, disability, sexuality, and science fiction. To learn about Marlena Chertock, go to marlenachertock.com.

Continuing our discussion with warrior, Samah Khan. Samah’s dream was to be a doctor. She was making her dream a reality when in her penultimate year of medical school, mysterious and chronic symptoms started. She graduated but her health issues forced her to give up practicing medicine, her passion in life. Samah spent the following years searching for her diagnoses, being dismissed by the medical profession, and managing her new reality. With persistence, Samah was finally diagnosed with psoriatic arthritis, fibromyalgia, and joint hypermobile syndrome or Ehlers-Danlos, but to this day, doctors are unresolved on her conditions, leading her to suffer from improper management. In Part One, Samah reveals how she redefined success for herself. In Part Two, Samah shares her unique perspective on why doctors tend to dismiss patients with chronic illness especially functional disorders such as fibromyalgia and chronic fatigue syndrome and the importance of believing the patient. If you would like to become part of Samah Khan’s Facebook group, go to PICK SEBBIE BC SEBBIE PICKS U and send an invitation request.

Meet warrior, Samah Khan. Samah’s dream was to be a doctor. She was making her dream a reality when in her penultimate year of medical school, mysterious and chronic symptoms started. She graduated but her health issues forced her to give up practicing medicine, her passion in life. Samah spent the following years searching for her diagnosis, being dismissed by the medical profession, and managing her new reality. With persistence, Samah was finally diagnosed with psoriatic arthritis, fibromyalgia, and joint hypermobile syndrome or Ehlers-Danlos, but to this day, doctors are unresolved on her conditions, leading her to suffer from improper management. Tune in as Samah reveals how redefining success for herself was instrumental in finding new meaning in her life again and allowed her to move forward as a medical editor and writer and founder of the Facebook group called PICK SEBBIE BC SEBBIE PICKS U where many chronically ill come for support. Samah also discusses the lack of proper training for doctors especially as it pertains to rare and chronic conditions. If you would like to become part of Samah Khan’s Facebook group, go to PICK SEBBIE BC SEBBIE PICKS U and send an invitation request.

Continuing our discussion with warrior, Kashinda Marche. In 1995, Kashinda was a nineteen-year-old, new mother when she received the life-changing diagnosis of HIV. Reaching a breaking point with her mental health, Kashinda choose to focus on changing her mindset. Four neurosurgeries and many diagnoses followed throughout the years including Hidradenitis Suppurative, Autoimmune Disorder, Adrenal Insufficiency, Pituitary Adenoma, and Peripheral Neuropathy. Listen to Part Two as Kashinda shares how discovering of her authentic self fuels her passion to inspire, uplift, and empower African American girls and the chronic illness community as a published author, a life lesson speaker, a TEDx speaker, an Executive Committee Member with The Raleigh-Apex NC NAACP and an Executive Director of the nonprofit, Kreative On Purpose. Kashinda believes health and life challenges don’t need to prevent one from living a fulfilled life. To learn more about Kashinda Marche, her services and her nonprofit, Kreative On Purpose, go to https://www.kreativeonpurpose.org.

Meet warrior, Kashinda Marche. In 1995, Kashinda was a nineteen-year-old, new mother when she received the life-changing diagnosis of HIV. Reaching a breaking point with her mental health, Kashinda choose to focus on changing her mindset. Four neurosurgeries and many diagnoses followed throughout the years including Hidradenitis Suppurative, Autoimmune Disorder, Adrenal Insufficiency, Pituitary Adenoma, and Peripheral Neuropathy. Tune in to Part One as we hear Kashinda tell her remarkable story and explain the importance of mindset and of discovering her authentic self. This discovery fuels her passion to inspire, uplift, and empower African American girls and the chronic illness community as a published author, a life lesson speaker, a TEDx speaker, an Executive Committee Member with The Raleigh-Apex NC NAACP and an Executive Director of the nonprofit, Kreative On Purpose. Kashinda believes health and life challenges don’t need to prevent one from living a fulfilled life. To learn more about Kashinda Marche, her services and her nonprofit, Kreative On Purpose, go to https://www.kreativeonpurpose.org.

Continuing our conversation with warrior, Allyson Finn. Allyson is a chronic illness advocate, substitute teacher, actress, and business consultant who has spent the last decade unraveling different health issues caused by a hypermobile form of Ehlers-Danlos Syndrome. Recently, Allyson has been experiencing symptoms including severe gastro issues possibly due to POTS, a comorbidity of Ehlers-Danlos. A true veteran of managing chronic illness, Allyson has developed valuable self-advocacy skills in order to best support her physical and mental health. Tune in as Allyson shares more self-advocating advice including how she managed her medical treatment while experiencing new symptoms.

Meet warrior, Allyson Finn. Allyson is a chronic illness advocate, substitute teacher, actress, and business consultant who has spent the last decade unraveling different health issues caused by a hypermobile form of Ehlers-Danlos Syndrome. Recently, Allyson has been experiencing symptoms including severe gastro issues possibly due to POTS, a comorbidity of Ehlers-Danlos. A true veteran of managing chronic illness, Allyson has developed valuable self-advocacy skills in order to best support her physical and mental health. Listen as Allyson shares her thoughts on self-advocating when managing new or difficult doctors and searching for the best medical team and solutions for you. She firmly believes you are the expert on your own body!

Meet warrior, Aston Martinez. Aston is diagnosed with Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Narcolepsy, Chronic Activated Epstein Barr Virus, Myalgic Encephalomyelitis and Trigeminal Neuralgia. Aston understands biases are part of being human. However, when doctors and medical staff fail to recognize and address their personal biases, they can cause irrevocable physical and mental harm to their patients. Listen as Aston shares her experience with biases in healthcare, their impact on her medical care and mental health, and how these experiences have fueled her passion to raise awareness on living with rare conditions. To learn more about Aston Martinez or the organization she works for called Habit Nest, go to www.habitnest.com.

Continuing our discussion with warrior, Courtney, who along with uncommon conditions of POTS and Ehlers-Danlos Syndrome, struggles with worsening unexplained and life-altering symptoms. After experiencing extremely painful and concerning complaints for over a month and receiving little help from her family physician and other specialists, Courtney reluctantly attended her local emergency department only to be confronted with negligence and judgement. Tune in as Courtney talks about how her traumatic experience came to an end, and how she’s coping in its aftermath.