A photo of podcast guest Stacey with the Rare Patient Voice logo

Stacey From Rare Patient Voice on Her Path to Advocacy

Stacey is seemingly living the dream. Working as a social media manager and patient advocate for Rare Patient Voice, she balances work with being a wife, mother, dog mom, caregiver, and pursuing her goal of a happy healthy home on the islands of Hawaii. For most people the normal struggles Read more

Living with Collagenous Gastritis

Ezra lives with collagenous gastritis (CG), one of the rarest conditions we’ve ever covered on the Major Pain podcast. Collagenous gastritis is characterized by a buildup of collagen in the digestive tract, which causes bumps or nodules to form. The most common symptoms are abdominal pain and anemia. Ezra has Read more

Kaitlyn Tells Us About Living with 14 Chronic Illnesses

Kaitlyn is a 23 year old recent college graduate who has been diagnosed with a whopping 14 chronic illnesses. They include Crohn’s disease, polycystic ovarian syndrome (PCOS), prediabetes, psoriasis, hidradenitis suppurativa (HS), dermatographism, chronic hives, dysautonomia, hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), vasovagal syncope, cyclic vomiting syndrome Read more

Living with Idiopathic Intracranial Hypertension (IIH)

Michelle is unsure when her journey with idiopathic intracranial hypertension (IIH) began. She started experiencing chronic migraines and pulsatile tinnitus in her 20s, which may have been the first sign. However, a freak accident in which a man fell from a theater balcony onto Michelle in 2017 intensified her symptoms, Read more

Crohn’s Disease and Deep Vein Thrombosis Inspired Douglas To Become a Chinese Medicine Practitioner and Sex Therapist

Throughout his life, Douglas had been plagued by random episodes of fever, but they usually passed on their own and he was able to mostly ignore them. That all changed in his late 20s, when a particularly horrible fever took him to the emergency room. Doctors discovered an infection from Read more

Living with Ankylosing Spondylitis, Crohn’s Disease and Fibromyalgia

Elias has a trio of chronic pain syndromes, ankylosing spondylitis, Crohn’s disease and fibromyalgia. Ankylosing spondylitis is the least well-known of these conditions, and involves a cycle of inflammation, calcification, scarring and bone formation that can actually fuse vertebrae together over time. Crohn’s disease is a form of inflammatory bowel Read more