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Join us as we delve into the experiences of patients with long-term complex conditions who are often met with disapproval or suspicion by medical professionals for being knowledgeable about their own health. Our …
How knowledgeable patients face suspicion in medical care [PODCAST]
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We welcome Jennifer Obel, an oncology physician, who shares her personal journey of retiring from a fulfilling medical career due to Ehlers-Danlos Syndrome. Reflecting on the recent presidential debate and the health concerns …
My health ended my career. Joe Biden’s health should prompt the same action. [PODCAST]
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Join us for a conversation with Kara Wada, an adult and pediatric allergy, immunology, and lifestyle medicine physician, as she shares her personal journey with Sjogren’s. Discover how her experience as both doctor …
A doctor’s journey with Sjogren’s [PODCAST]
Just when you think your autoimmune disease(s) are calming down and you feel better, a dramatic worsening of disease signs and symptoms can happen without warning. They are unpredictable and disruptive, and can cause a disturbing influence in your every attempt to feel well.
Taking medications, following a healthy diet and exercise program, and getting enough sleep don’t seem to stop “flares.” These are the markers of autoimmune disease activity, meaning …
Understanding autoimmune flares: triggers, symptoms, and treatment options
For many people with autoimmune disease, fatigue is the most debilitating symptom. Why autoimmune disease and fatigue go together is not entirely understood, although inflammation may be part of the reason. Other possible factors include pain, poor sleep, inactivity, and depressed mood. Fatigue is not just feeling tired. Fatigue is composed of both physical fatigue and mental fatigue. Unlike being tired, fatigue is rarely resolved with rest or sleep. Trying …
Crippling fatigue: a common enemy of autoimmune disease
The prevalence of coronary artery disease (CAD) and stroke is increased in patients with chronic inflammatory diseases such as rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE). These are also known as IMID: immune-mediated inflammatory diseases. Rheumatic IMIDs, including rheumatoid and osteoarthritis, are associated with multiple cardiovascular issues with an enhanced cardiovascular risk, including premature coronary artery disease. Lupus can also increase coronary artery disease because of the elevated chronic …
Autoimmune disease? You’re more likely to get heart disease. Here’s why.
“You sure know a lot about your condition.”
Many patients with long-term illnesses have heard this. When it comes from a medical professional, it’s never a compliment. It’s a statement that is usually, at best, laced with disapproval.
The thing is, patients like me, who have long-term complex conditions, are encouraged to know a lot. As someone with CVID and other issues, I’ve attended seminars and patient Q&As with immunologists. There’s a …
The dichotomy of patient health literacy
As physicians, we are trained to dissect symptoms and to hunt for a diagnosis. But my own journey with Sjogren’s, like my patients’, wasn’t a textbook case. It was a puzzle with pieces scattered over decades, ignored or dismissed at each turn, including by myself.
There’s the college student, fearing the agony a simple meal might bring, never dreaming of asking why. The med student, convinced of an impending heart attack, …
From doctor to patient: my Sjogren’s journey and a challenge to colleagues
Autoimmune diseases occur when the immune system mistakenly attacks healthy cells and tissues in the body. More than 80 recognized autoimmune diseases exist, including alopecia areata, rheumatoid arthritis, psoriasis, lupus, multiple sclerosis, celiac disease, scleroderma, and Raynaud’s. These conditions can cause a wide range of symptoms, making management crucial for maintaining a good quality of life.
Why the immune system attacks healthy cells is a bit of a mystery in most …
Autoimmune disease flares: stress, grief, and management tips
When a patient comes to us and describes confusing symptoms that don’t seem to fit into any immediate category, we can see it in two different ways: as a challenge, we can rise to, a riddle to solve … or we can see it as an opportunity to denigrate the patient, to imply that they are malingering or that it’s “all in their head.” This tendency is amplified when we …
Real pain deserves real treatment
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We sit down with Denise Reich, a patient advocate, to explore her journey of navigating the healthcare system with Ehlers-Danlos syndrome (EDS). Denise shares her experiences from the initial mention of EDS during …
Navigating the health system with Ehlers-Danlos syndrome [PODCAST]
“Do you have Ehlers-Danlos syndrome?”
It wasn’t a question I expected during an ophthalmology appointment. It was, however, one I’d been asked before. Two other specialists had suggested I might have connective tissue issues, but nothing had ever come of it. All I could tell my ophthalmologist, then, was what I’d said before when it had come up: “No, not as far as I know, but I’ll ask about it.”
Ehlers-Danlos syndrome: Overcoming doctor bias for a life-changing diagnosis
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Join Dinaaz Lentin, a patient advocate. In this discussion, Dinaaz shares her powerful book, BATTLE SCARS: A courageous memoir of one person’s life experience within our health care system. Get ready to dive into her personal journey, …
A patient advocate’s battle scars in health care [PODCAST]
One thing is for sure: in today’s modern world, and as we recover from the impact of a pandemic, we are busier than ever. Another certainty is just how many of us are constantly on the move, with over 900 million people traveling internationally every year. Whether you’re traveling for pleasure or business, many do so without ever considering the health risks and security concerns to which we are exposed. …
Behind closed doors of traveling: the concerns often overlooked
Dr. James (Jim) Whitlock, a neurologist, and Ann McColl met at a writers’ workshop in Maine in 2022 and discovered a shared interest: patients with complex conditions and their journeys in the medical system. Dr. Whitlock’s practice focused on the rehabilitation of individuals with severe traumatic brain injuries. Attorney McColl had been a patient with a debilitating spinal condition and was ultimately helped by a neurosurgeon. A year after her …
A complex patient interviews a retired physician
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Join Tami Burdick, a patient advocate and the author of Diagnosis Detective: Curing Granulomatous Mastitis. Discover the overlooked factors that can contribute to unexplained health issues and learn practical steps to protect yourself and your loved ones …
Protecting your health from environmental threats [PODCAST]
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Join Tami Burdick, a patient advocate and author of Diagnosis Detective: Curing Granulomatous Mastitis. Discover the ins and outs of medical gaslighting, learn to recognize the red flags, and explore how both patients and health care providers …
Unmasking medical gaslighting [PODCAST]
As an allergist/immunologist, the spectrum of mast cell disorders, including mastocytosis, idiopathic anaphylaxis, chronic hives, and angioedema, is not a new concept. That said, in recent years, we have seen an uptick in patients presenting with a spectrum of symptoms attributed to misbehaving mast cells. Although the medical community has acquired extensive knowledge of these more established diagnoses over time, the newer entity mast cell activation syndrome (MCAS) is not …
Challenges faced by patients with mast cell disorders
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Join Humeira Badsha, a rheumatologist, as she shares her recent, unexpected journey through grief, offering profound insights into the emotional challenges faced by medical professionals. From a tearful moment of vulnerability with a patient to the traumatic …
Navigating grief: a doctor’s personal journey [PODCAST]
When we think of symptoms or ailments, they are often a signal to us that there’s something off with our health. Yet, many of us, as well as doctors, often don’t think so much outside the traditional box when it comes to what may be influencing or causing these health issues. I have even experienced this personally in my life.
Some people may even experience ongoing frustrations with concerns failing to …
Everyday dangers unknowingly impacting our health
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