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Izabella Wentz, PharmD, FASCP, is an internationally acclaimed thyroid specialist and a licensed pharmacist who has dedicated her career to addressing the root causes of autoimmune thyroid disease after being diagnosed with Hashimoto’s thyroiditis in 2009. She is the author of three books on Hashimoto’s: Hashimoto’s Thyroiditis Lifestyle Interventions for Finding and Treating the Root Cause, Hashimoto’s Food Pharmacology, and Hashimoto’s Protocol, which became a #1 New York Times bestseller. Her latest book, Adrenal Transformation Protocol, was released on April 18th, 2023. The book focuses on resetting the body’s stress response through targeted safety signals and features a 4-week program that has already helped over 3,500 individuals. The program has an impressive success rate, with over 80% of participants improving their brain fog, fatigue, anxiety, irritability, sleep issues, and libido. Dr. Wentz currently lives in Austin and Los Angeles with her husband, Michael, and their son, Dimitry.
Tune in as Dr. Wentz shares:
- how she became interested in thyroid health
- what symptoms she experienced when she was diagnosed with Hashimoto’s
- how she applied her pharmacological knowledge to reverse her own Hashimoto’s
- how lifestyle changes (especially nutrition shifts) supported her healing
- how the concept of adrenal dysfunction became a new focus for her — and allowed her to reverse sleep and anxiety issues
- that if you have a thyroid issue, you’re likely also experiencing adrenal dysfunction
- what adrenal dysfunction means: that your body is stuck in a chronic stress response
- what a cortisol rollercoaster feels like
- how ME/CFS and fibromyalgia patients can also experience adrenal dysfunction
- why the adrenal response to stress makes sense biologically — even if it doesn’t feel like it’s serving us
- where the term “adrenal dysfunction” came from — and why it’s an oh so real biological response, despite the naysayers
- why so many people who identify as female live with adrenal dysfunction
- why it’s so important to balance our blood sugars and eat more protein in order to begin to treat adrenal dysfunction
- the success rates of her Adrenal Transformation Protocol, and how it works
- suggestions for supplementation (which should always be reviewed with your MD!)
Key links mentioned in this episode:
The Thyroid Pharmacist
Books
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Chris Armstrong, PhD was first introduced to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) through research into metabolomics at the University of Melbourne, Australia. As he delved deeper into his work, he discovered its connection to ME/CFS patients, and empathized so much with their plight – and the lack of resources, funding, and research available to both patients and clinicians – that he made it his mission to continue research in this field in the hope of finding a cure. Since publishing his first ME/CFS metabolomics study in 2015, he has continued research into the disease, spurred on by patients whose stories have moved him. As the Open Medicine Foundation’s Science Liaison, Chris works on collaborative studies with their partner organizations and helps to translate scientific language for the public. He is also a Visiting Scholar at Stanford University.
Key links mentioned in this episode:
Open Medicine Foundation
OMF on Facebook
OMF on Twitter
OMF on Instagram
Tune in as Chris shares...
- how he got involved in ME/CFS research
- his main area of expertise: metabolomics
- that ME/CFS outbreaks can be traced back as far as the mid-19thC, with symptoms commonly related to significant concerns with fatigue, sleep, pain, brain fog, and a 50% loss of general function
- a description of PEM – post-exertional malaise – which is the main component of ME/CFS
- that there are up to 50 symptoms associated with ME/CFS, but the main five are: PEM, fatigue, unrefreshing sleep, cognitive impairment, and pain
- that ME/CFS is highly comorbid with fibromyalgia and other invisible illnesses
- that ME/CFS was originally described as a flu- or polio-like illness; and was first properly explained by the Ramsay definition and given the moniker of “Myalgic Encephalomyelitis”
- that patients need to have ME/CFS for 6+ months in order to receive a diagnosis
- one of the major schools of thought with regard to ME/CFS: that it stems from a dysfunction of stress response in the body; it’s possible, however, that bacteria and other pathogens may also play a role in onset
- that 1 in 200-300 people has ME/CFS
- that ME/CFS is NOT categorized as a rare disease; but it’s treated by the medical community as such – creating stigma through lack of research and understanding
- that ME/CFS has been commonly misdiagnosed as a form of hysteria – both in the past and in the present
- that very few clinicians dig in deep enough with their patients in order to give them an ME/CFS diagnosis – but that burden is not just on doctors, as diagnostics and treatment guidelines need to be standardized in order to support their work
- that the Open Medicine Foundation was built to provide effective treatments for ME/CFS patients
- that meeting patients has inspired him in his work, even from the very beginning
- the desperate need for funding for continued research into ME/CFS
- the politics of funding medical research
- that ME/CFS is often considered to be more a psychological than a physiological illness
- that the National Institutes of Health (NIH) has been more receptive than some Aussie governing bodies when it comes to research into ME/CFS
- the biggest bright spot in ME/CFS: the momentum of funding for research
- OMF’s collaborative research initiatives with Harvard, Stanford, and others
- that ME/CFS could be a collection of several diseases, and not one disease in and of itself
- the importance of specifics in diagnostics
- why medicine needs to be patient-centered
- the importance of pacing in order to avoid a crash related to PEM
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Saknas det avsnitt?
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Andrew Gurza is an award winning Disability Awareness Consultant and the Chief Disability Officer and Co-founder of Bump’n, a sex toy company for and by disabled people. Andrew uses they/he pronouns and identifies proudly as disabled. Their work has been featured on BBC, CBC, Daily Xtra, Gay Times UK, Huffington Post, The Advocate, Everyday Feminism, Mashable, Out.com, and several anthologies. He was the subject of an award-winning National Film Board of Canada Documentary, Picture This. Andrew has guested on a number of podcasts, including Dan Savage’s Savage Love and Cameron Esposito’s Queery. He has spoken all over the world on sex, disability and what it means to be a Queer Cripple. He is also the host of Disability After Dark: The Podcast Shining a Bright Light on Disability Stories, which won a Canadian Podcast Award in 2021, was a Queerty Award nominee, and was chosen as an Honoree at the 2020 Webby Awards. The show is available on all platforms. Andrew is also the creator of the viral hashtag #DisabledPeopleAreHot. You can find out more about Andrew by going to www.andrewgurza.com and connecting via social media @andrewgurza_.
Tune in as Andrew shares:
how they were diagnosed with cerebral palsy (CP) at the age of one and a half their more recent diagnosis of IBS, and how it has presented its own challenges how COVID has affected their sex life, and why they hire sex workers where they can see room for disability discourse to grow how they emotionally process ableism from day-to-day the nuances of caregiving, and how bad management can lead to dehumanizing experiences for patients how care management can be improved from the top-down how they have cultivated their mindset — and how their #1 advocate, their mom, was key in encouraging them to develop a thick skin and a sense of humor a nuanced conversation about accessibility — and why it’s more difficult for disabled creators to create accessible content, even if we’d like to how we can work to get out of the public health crisis of bias in healthcare: by hiring those of us who are historically excluded to positions of power, to reshape the system from the top-down why and how they were inspired to create Bump’n — the world’s first disability-driven sex toy
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Dailyn Santana is a first-generation Cuban-American actress, keynote speaker, spoken word poet, and mental health advocate. Her work focuses on eradicating mental health stigma and her personal experience of living with bipolar 1 disorder, depression, and anxiety. Her mission is to be an example that those living with mental illness CAN live a happy, fulfilling life. She believes that living in your truth is the most powerful tool you can have, and performs her spoken word poetry at events and schools/universities across the country. Her work has been featured on or at The Dr. Oz Show, ALL DEF Poetry, Nuyorican Poets Cafe, Swaay Magazine, I and I Outfitters, We All Grow Latina, and Spiritú, and she has collaborated with Mitú, the BeVocal SpeakUp for Mental Health initiative, BeRemarkable Foundation, The Womens Empowerment Network, the American Foundation for Suicide Prevention, and the National Alliance for Mental Illness.
Tune in as Dailyn shares:
when she first experienced mania and psychosis — but that she lived without diagnosis for at least a decade how she was haunted by stigma and shame from the early days of her diagnosis how her diagnosis affected her relationship to her creative outlet: poetry the role her cultural background played in her relationship to her diagnosis and care why she came out of her “bipolar closet” how she interviews potential practitioners, and her tips for others looking for a new therapist why her diagnosis doesn’t define her how she became a mental health advocate what a “warm line” is, and how helpful it can be (see the links in show notes for some directories!) why asking for help is a sign of strength
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Phoebe Lapine is a food and health writer, gluten-free chef, culinary instructor, recipe developer, wellness blogger, Hashimoto's advocate and speaker, and the voice behind the award-winning blog Feed Me Phoebe. Named by Women’s Health Magazine as the top nutrition read of 2017, Phoebe’s debut memoir, The Wellness Project, chronicles her journey with the autoimmune disease, Hashimoto’s thyroiditis. She is the host of the SIBO Made Simple podcast and author of the new book by the same name which helps those newly diagnosed or chronically fighting small intestinal bacterial overgrowth. Phoebe’s work has appeared in Food & Wine, Marie Claire, SELF, Glamour, Cosmopolitan and Mind Body Green, who named her one of 100 Women to Watch in Wellness. She was born and raised in NYC — where she continues to live and eat.
Tune in as Phoebe shares:
how she was first diagnosed with Hashimoto’s thyroiditis how her health has impacted her relationship with food how much work it takes to be well, especially when one is impacted by chronic illness what SIBO is, and how she was diagnosed how the symptoms of SIBO can manifest in the body about the state of SIBO research and clinical practice what it was like to humble herself with her own advice after writing The Wellness Project how big a role stress can play as a root cause in chronic illness about the close correlation between IBS, SIBO, and autoimmune disease what a low-FODMAP diet is all about how she accesses and optimizes her own wellness what she thinks the next frontier of gut health will be
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Nikita Williams is a mindset business coach and the host of the podcast, She’s Crafted to Thrive. She was diagnosed with endometriosis in 2009 and fibromyalgia in 2010. These diagnoses inspired her to use the training she received from previous jobs to jump-start her career as a business coach. Nikita learned that having a chronic illness did not limit her potential. In fact, it helped her to see the possibilities for herself and for her clients. Her aim is to help all creative women — especially those who live with chronic illness — to go from feeling limited to limitless so that they can create a life and business that thrives, in their unique way.
Tune in as Nikita shares:
that she first noticed debilitating pain on her honeymoon, but noticed irregularities in her cycle from its appearance at the age of 15 the learning curve of “not knowing what you don’t know” that she’s been additionally diagnosed with PCOS (polycystic ovarian syndrome), adenomyosis, IC (interstitial cystitis), and vestibulitis (which she now has as a result of medical trauma caused by a healthcare provider) why she decided to take a year off all medications that she has never been offered mental health support for her conditions how she discovered she was a highly sensitive person (HSP) why she only sees female doctors how seeing a urogynecologist was a life-changing experience for her why self-advocacy is so vitally important why finding a way to cope with her pain has always been her first priority — and yes, even before the question of her fertility that the depth of her chronic pain and surgical intervention forced her to face her mortality how essential oils and EFT (Emotional Freedom Technique) have helped her manage her pain and anxiety why her hysterectomy triggered depression and anxiety how sharing about her chronic illnesses helped her find healing why she chooses to be intentional with her energy that in order to embrace your future, you have to face your past
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Originally launched as a means of sharing her craft projects, Kendall Rayburn’s namesake blog has since evolved into her passionate full-time occupation: a place to pour her heart into content across the lifestyle spectrum (see: plus-size fashion, family-friendly travel and activities, home decor, recipes, and more). It has also become a powerful vehicle for sharing her struggles with endometriosis — all with the token contagious positivity that’s garnered her a devoted following. Add to that her candid takes on being a Spoonie mom to son Wyatt, who lives with autism, and you’ve got an oasis of advocacy and lifestyle like no other. We dare you not to fall in love with the happy, hectic world of Kendall!
Tune in as Kendall shares:
how she was gaslighted from an early age to believe her period pain was normal that she became aware her son was on the autism spectrum when he was 18 months old that she also lives with anxiety, depression, and PTSD following adverse childhood experiences that she was diagnosed with endometriosis at 22, and told by her doctors that she was so far advanced in her disease that she needed to consider starting a family immediately if she ever wanted to have one that the pain of her diagnosis forced her to finish college online that after her second child, she was offered a hysterectomy for her pain — and that by the age of 26, she was undergoing menopause that to this day, she has had eight surgeries for her pain — and it is still debilitating why she regrets her hysterectomy that she was never offered therapy as she navigated both her diagnosis and her son’s — and why it plays such an important role in her life now how medical research has failed her as a woman living with stage IV endometriosis how she manages her pain now what her son has taught her about resilience her advice for others living with chronic pain and/or advocating for others
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Dr. Akilah Cadet is the Founder and CEO of Change Cadet consulting firm, which offers a broad array of anti-racism and diversity services including strategic planning, crisis rebuilding, advising, executive coaching, and facilitation. Cadet (her last name) is a French term that means soldier. As it's often an uphill battle for BIPOC, women, and historically excluded communities to achieve success and equity in the workplace, Change Cadet prepares soldiers of change to overcome these continuous battles so individuals and companies can thrive. Akilah has 15+ years of experience working in various organizations, with both private and public sector companies. She literally has all the degrees (Bachelor of Science in Health Education in Community Based Public Health, a Master of Public Health, and a Doctorate of Health Sciences in Leadership and Organizational Behavior), lives in Oakland, CA, has a rare heart condition, and is a proud Beyoncé advocate…and has just been diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). And on top of all that, she’s the host of the Change Cadet Podcast!
Tune in as Dr. Cadet shares:
how her early symptoms first manifested the truth about accurate diagnosis: “in order to be diagnosed, you have to be misdiagnosed” how she was diagnosed with coronary artery spasms, or Prinzmetal’s angina; as well as inappropriate sinus tachycardia, pre-atrial contractions (irregular heartbeat), and orthostatic hypertension how she faced her own mortality during the process of being diagnosed what her long-term care looks like with regard to heart health: ER visits and the risk of heart attack the criteria she holds her care providers to why she is still waiting for genetic testing to determine her hEDS type how she manages her symptoms day-to-day — and how so much of that management involves clear communication what true energy management looks like for her why the “ER is nothing but trauma for [her]” — and why healthcare in America is such a mess a conversation about the concepts of intersectionality and inspiration in chronic illness and disability identities her advice for Spoonies and their loved ones
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Faith Crittenden, MD MPH is a recently-graduated pediatric resident with her Doctorate of Medicine from the University of Connecticut School of Medicine. While a student, she was an active member of the Student National Medical Association (SNMA) and the American Medical Association (AMA). In 2016, she was appointed as the national liaison for SNMA to AMA — Medical Student Section. She has helped the progression of organized medicine in many ways — most recently is a co-author on several historic policies passed through the AMA House of Delegates, such as: Racism is a Public Health Threat, Racial Essentialism, and Combating Police Brutality. This year, she also added Combating Natural Hair and Cultural Headwear Discrimination in Medical Professionalism to this list. Faith was also the Deputy Editor for the Yale Journal of Biology and Medicine March 2021 preventative medicine issue. This TedX alumna has also landed coverage around the country through op-eds and articles featured in Health Affairs, Hartford Courant, CT Mirror, Yale Daily, and In-training.org. Faith knows that in order to change the culture of medicine, we must evaluate and critique the health policies of the past, present, and future. In April 2020, she launched a podcast called Coloring Health Policy which focuses on how health policy impacts minority communities, both domestically and internationally. Faith holds a Bachelor of Science degree in chemistry, Minor in molecular cell biology with Honors from the University of Connecticut, and Masters of Public Health in Health Policy from Yale University.
Tune in as Faith shares:
how she has confronted trauma-informed services in healthcare, and how her early experience shaped her interest in medicine the importance of prioritizing mental health care about her historic role in having racism declared a public health crisis by the AMA how hard she and her team worked to have this policy passed by the AMA her hope that more BIPOC train as physicians in the future — and that these recent policy declarations can help pave the way how to get involved in activism locally, to support ongoing work in racial justice and healing the role of Black men in healthcare reform in America where her advocacy work is headed next: to addressing natural hair and cultural headwear discrimination
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Pooja C. Danay is a South Asian mental health advocate who lives with obsessive-compulsive disorder (OCD). An actor, entrepreneur, and dancer who specializes in Bollywood dancing (been doing it since she was 5 years old!), she loves traveling and spending time with family and friends. Born and raised in New Jersey and currently living in NYC with her husband, she attended Pace University and the Lubin School of Business. She is proud of her culture: where her family comes from (India) and its rich traditions. She is a huge believer in advocating for what you believe in, and hopes that speaking up and sharing her story can help others and inspire hope.
Tune in as Pooja shares:
that she was diagnosed with OCD at the age of 13, but recognized symptoms earlier than that that her symptoms manifested with obsessive thoughts, compulsions, depression, and anxiety that OCD is an anxiety disorder, and the compulsions are usually designed to give someone a sense of control when they don’t feel they have it how her background influenced her approach to mental health care — because mental health and illness can be a taboo topic in South Asian cultures one of the biggest challenges of her diagnosis: finding an appropriate therapist how her diagnosis affected her relationships, especially as a teen why dealing with mental illness is such a lonely experience, especially early on why support and community is as vital as finding the right care providers what ERP (Exposure and Response Prevention) is, and how it has helped her mitigate the negative aspects of her disorder how stress can influence her symptoms how OCD affected her in the workplace early in her career, and how it influences her treatment of employees now what we most desperately need to change about American healthcare in order to best serve patients in need her thoughts on using medication to manage her illness her advice for others living with chronic and/or mental illness why we need to destigmatize conversations about mental health and illness
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Nthabeleng Ramoeli was born in the small southern African country of Lesotho. At the age of 12, she began to experience chronic pain and subluxation of her joints, in addition to extreme skin elasticity, GI and lung issues, and anapyhlaxis. These symptoms persisted through her admittance to university, where test after test came back inconclusive. So, she began her own research…and stumbled upon Ehlers-Danlos syndrome (EDS). While her diagnosis was eventually confirmed, none of the practitioners in her region knew what EDS was — or how to treat it. She found herself arguing with doctors every time she had contact with the medical system, as most couldn’t admit the limit of their own skills and knowledge. In 2014, she was in an accident in which she sustained over 10 broken bones down her spine, among other injuries. A spinal specialist informed her that EDS had saved her life: her joints were so hypermobile, the impact hadn’t shattered her spinal cord…and while she spent close to a year in rehabilitation, she can walk again today. In 2017, she founded Rare Diseases Lesotho Association (RDLA) in order to serve others living with rare disease in her corner of the world — by raising awareness, providing care and education services, and bringing those who feel alone into community. In 2020, this led to the creation of the Rare Diseases African Alliance, which also includes the Rare Diseases Namibian Alliance. As an activist and advocate for EDS and other rare diseases, Nthabeleng has found ways to cope with her diagnosis despite the hardships she faces — and is fueled by helping others live as comfortably and fully as possible with rare disease.
Tune in as Nthabeleng shares:
when she first started experiencing symptoms of EDS, and how she was diagnosed how she struggled with doctors who didn’t understand her diagnosis and treatment how her constellation of symptoms finally made sense when she discovered EDS in her research her experience in a psychiatric hospital, which further proved her diagnosis was not in her head the degree to which her organs are involved in her EDS type how her diagnosis has impacted her relationships how and why she founded RDLA how disability has transformed her presence in the world how you can support RDLA’s efforts her advice for others living with invisible disability
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The idea behind non-profit community support organization Bolus Maximus began in late 2017 when Matt Tarro and Brandon A. Denson started having weekly discussions about their lives with type 1 diabetes (T1D). Coming from completely different backgrounds, the two actually had a lot in common — and recognized they both wanted to change the narrative around men’s freedom to express their emotions. Brandon has taken the helm of this movement in an effort to address the sheer lack of Black faces on organizational boards. A stand-out linebacker and walk-on at Michigan State, Brandon has played football at the highest level while living with diabetes (and earned a Bachelor’s degree in Criminal Justice while he was at it). His devotion to community, specifically working with young Black diabetics, is nothing short of inspiring — and his career in the AFL, CFL, and NFL has allowed him to connect with more and more young people living with his condition. Extreme sports suit Brandon’s counter-part, Matt, who grew up in a medical family and spent 10 years in digital advertising, media, and marketing. With a background in creative design and brand development, their work together is just getting started. Fun fact: Brandon was the first Black man with T1D to compete on an aired episode of American Ninja Warrior! As Matt & Brandon say, “Remember: it’s OK to ask for help, show emotions, or have bad days. Let’s talk about tough stuff.”
Tune in as Brandon & Matt share:
when and how they were both diagnosed with T1D that when they were diagnosed, there was not support for teenage males with T1D how technology advancements in diabetes care has changed their lives how they were inspired to start giving back to their community why chronic illness diagnoses can be so taxing — beyond the physical the impact of Matt’s diabetic alert dog, Forest, on his life how their diagnoses have impacted their relationships what inspires them every day why mental health support is so vital to survival with a chronic illness when and why Matt began to address substance use a discussion of ADA compliance in addressing individuals who work with service animals (and the animals themselves) a discussion of access issues with regard to medical care and equipment for diabetes management why money matters in the healthcare system their advice for living well with T1D
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Morgan Greene is a chronic illness and holistic wellness blogger and content creator at Is Was Will Be blog. After being diagnosed with rare chronic illness Myasthenia Gravis (MG), Morgan started writing to process her experience — “serving as both therapy and accountability” for her, as she so aptly puts it. As her journey progressed, she found solace in putting into words what many of her fellow Spoonies were experiencing. What started as a hobby has turned into a passion, as Morgan continues to spread awareness about living with chronic illness and inspiring women to live their illest lives. As she details on her blog, “I challenge you not only to share the journey with me, but also to start one of your own. It is my hope that through my words, you will find the fuel to ignite your own personal revolution. That you will finally start living according to your own…happiness. There’s no easy button. It’s not going to happen tomorrow, next week, or even next month. But if you just start, one day you will be able to wake up to a life you made happen.”
Tune in as Morgan shares:
how her symptoms started, and how she was initially diagnosed the importance of working with a specialist for your condition what her MG treatment looked like — and how a thymectomy brought her MG into remission what MG is: a neuro-autoimmune condition why seeking support and community is vital as a Spoonie how her diagnosis helped her strengthen her self-love practices how MG has changed her approach to exercise how MG has shaped the way she sees her life now how reducing toxins in her daily life has improved her health why holistic wellness has become a major interest for her her top tips for thriving with chronic illness
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Dr. Karin Hehenberger has close to 20 years of experience in the life sciences sector. She served as an executive at Eyetech Pharmaceuticals and Coronado BioSciences, and had strategic management roles at Johnson & Johnson (Vice President, Metabolic Strategy), JDRF (Senior Vice President, Strategic Alliances), and McKinsey; as well as senior partnership roles at public (Brummer & Partners) and private (Scandinavian Life Science Ventures) multibillion-dollar investment funds. She received her MD and PhD degrees from the Karolinska institute, and did her post-doctoral fellowship as a JDRF stipend recipient at the Joslin Diabetes Center, Harvard Medical School. Inspired by her background and diagnosis of type 1 diabetes, she is the founder and CEO of Lyfebulb.
Tune in as Karin shares:
that she was always in good health — but that at the age of 16, this changed that shortly after, she was diagnosed with type 1 diabetes the fear that came along with her diagnosis what she wishes she’d done differently after her diagnosis that she spent the first decade after diagnosis largely hiding it from the world, even though it played a role in shaping her career that when her dad donated a kidney to her 12 years ago, doctors also suggested she get a pancreas transplant simultaneously what qualifies diabetes patients for pancreas transplants how she recognized that patients can be innovators — and how this inspired her to launch Lyfebulb how she also realized that patients need patients — and how this plays into Lyfebulb’s community today how she manages the side effects of her immunosuppressants the importance of educating care partners in the nuances of chronic disease — and how vital it is that patients learn to ask for what they need the obstacles presented by the American healthcare system what it was like to entertain motherhood as a patient on immune-suppressing drugs
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Jemma-Tiffany is a 17-year-old writer, passionate patient advocate, and founder of Hyperacusis Awareness. Having grown up with severe hyperacusis (a rare and poorly-understood disorder that causes her to experience physical pain from everyday sounds) has motivated her to raise awareness of others with similar conditions. Through her various efforts, Jemma has gained experience in patient advocacy and legislative change campaigning, and has been able to participate in numerous awareness-raising events. The goal of her work is to create a world in which those with hyperacusis, chronic pain, and rare disease are believed — and are offered all the unique environmental modifications and services they need to live pain-free, comfortable lives. Her current advocacy projects include: adding a title 6 (Telepresence and High-Level Sensory Modifications) to the ADA; collaborating with research scientists and the American Academy of Audiology to establish clinical practice guidelines to protect those with hyperacusis; establishing a national awareness week for the condition; and a recent Hyperacusis Awareness Conference; as well as a campaign to extend distance-based learning (implemented during the COVID-19 pandemic) for disabled students in need. Jemma-Tiffany has been featured and published by Migraine Magic, PatientDX, the Hearing Health Foundation, the American Chronic Pain Association, Rare Youth Revolution, and The Third Estate, among others.
Tune in as Jemma-Tiffany shares:
that she was born with cataracts, and is low vision/legally blind that she didn’t start experiencing issues with sound until she was about six years old that she was initially diagnosed with chronic migraine, but was eventually diagnosed with hyperacusis that hyperacusis was originally thought to be a psychosomatic condition — and as such, she has had to endure a lot of painful treatments how diagnostics have changed in recent years, as it regards hyperacusis that there is currently no complete treatment for hyperacusis what hyperacusis is, and how it can affect patients differently that the cause of hyperacusis is unknown, even in Jemma-Tiffany’s case how she has grown into a patient advocate how COVID has positively impacted her educational experience, enabling her to receive more supportive accommodations why she was driven to attempt suicide how she has been gaslighted over and over — in medical settings and beyond how some alternative therapies have helped her (though they have not cured her of her pain): TENS and PEMF, among others that she has been doing her own medical research since she was 11 years old, in order to present information to her doctors what she’s working on right now her advice for other young people living with chronic pain
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* * * TW / CW : mortality, and graphic discussion of the events during and in the aftermath of 9/11, 2001 * * *
Twenty years after 9/11, some first responders are still struggling with long-term health complications brought on by the historic event. For Tom Frey, a former NYC detective, the consequences started with a diagnosis of Hodgkin’s lymphoma — the treatment for which then caused pulmonary fibrosis (PF) — a life-threatening, incurable lung disease. His illness can be linked back to inhaled dust from his rescue and recovery efforts at Ground Zero. Tom’s not alone. Officials worry that deaths of 9/11 first responders due to illnesses caused by exposures at Ground Zero will soon outnumber deaths of those who lost their lives that day. Despite Tom’s terminal health struggles, he works hard to drive awareness, research, and funds for a cure for pulmonary fibrosis – especially during Pulmonary Fibrosis Awareness Month, which happens to be in September. A true hero, Tom will tell you he would do it all over again tomorrow, even as he struggles daily to breathe and relies on oxygen.
Tune in as Tom shares:
how he was first diagnosed with Hodgkin’s lymphoma in 2016 — as a result of inhaling toxic dust during and in the aftermath of 9/11 how one of his chemo drugs caused his pulmonary fibrosis diagnosis that the only cure for PF is a lung transplant — and his has been on hold because of COVID how the Pulmonary Fibrosis Foundation has changed his life the trauma of working in rescue and recovery after a disaster like 9/11, and the importance of talking about it how waiting to die — and not dying — forced him to live again…and why he hasn’t stopped moving since who his heroes are: nurses and doctors that while the average life expectancy for pulmonary fibrosis diagnosis is 2-5 years, with the right support it can be extended the difficulties he’s had dealing with the United Healthcare World Trade Center Fund to cover his life-saving treatments his plea that we take sensible precautions against COVID — like wearing masks a look back at what it was like on the ground on 9/11, and in the days following the attacks a reminder of all the individuals who were on the ground on 9/11, and whose lives and health have been impacted as a direct result
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Sara Naveed is a Canadian writer, chronic illness advocate, and founder of the blog Fabulous and Fatigued. 14 years ago, she was diagnosed with fibromyalgia following a hit-and-run. Inspired by her experience, she started the blog with the aim of creating awareness and ending the stigma of life with chronic illnesses. Her work has been published in various media outlets and platforms including Yahoo, MSN, The Mighty, The Tired Girl Society and DPC Education Center.
Tune in as Sara shares:
details of the hit-and-run that eventually triggered her diagnosis what the diagnosis and acceptance processes were like for her, as a teenager how chronic pain has changed her life how fibromyalgia manifests in the body how discovering accessibility services supported her in college that taking holistic approaches to her symptom management has been very supportive for her where she has encountered “toxic positivity” in the reactions of family and friends how her diagnosis has impacted her relationships how she has worked on her mindset to cultivate balance in her life her experiences of acceptance and bias within the medical system, as a Muslim woman of South Asian heritage why she uses CBD to manage symptoms from insomnia and anxiety to chronic pain how the immigrant experience — from a language perspective — impacts healthcare access how the Canadian healthcare system needs improvement in order to better serve patients a reflection on her early experience of chronic illness, and how it inspires her current work the importance of community in ongoing healing and acceptance
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Jenny McGibbon is a disabled graphic designer from Scotland, predominantly living with ME/CFS. She was born with a birth defect known as gastroschisis, and as a result she also lives with short bowel syndrome, chronic internal bleeding, and iron deficiency anemia. At the age of 16, she found herself in and out of hospital almost weekly — something that would continue on for some years. She couldn't relate to her peers anymore, and felt alienated in the new medical space she suddenly found herself occupying. Often the youngest person in the waiting room (by several decades), it became abundantly clear that none of the marketing, pamphlets, posters, or websites she was directed to were aimed at her demographic — or acknowledging her unique experience. So she took to the Internet to share her story — This Thing They Call Recovery. With a blog read in over 90 different countries, translated into over 50 languages, and a social media following of over 25k, Jenny is trying to get the word out: chronic illness can look like anything, happen to anyone, and everyone deserves to feel supported. Now in her mid-20s, Jenny is determined to help make sure no young person feels like they're dealing with health issues alone, and is committed to challenging the public perceptions of disability, sparking complex conversations and uniting Spoonies and their loved ones together. As a graphic designer, she uses a mix of visuals and copy to translate how life with illness feels, particularly when one is young. As she says: “I think there needs to be much more information out there about health — and ill health — presented in a friendly and approachable manner. Chronic illness affects your life as much as your body, and I think it's time more people knew about it.”
Tune in as Jenny shares:
how her chronic illness journey began in childhood, with gastroschisis and bowel surgeries that from the ages of two to 16 she was largely well, but that at 16 flares surfaced again through chronic bleeding in her intestines — which also caused iron deficiency anemia that she was eventually diagnosed with ME/CFS, but had to deal with a lot of pushback from the medical establishment how she got an ME/CFS diagnosis the symptoms that impact her most acutely — pain and fatigue a discussion of the social complexities of living with disability — from gratitude and “cures” to comfort zones, accommodations, accessibility, pride, and “passing” why she owes her life to the NHS how and why she started This Thing They Call Recovery what disabled identity means to her what the community she’s cultivated means to her why there doesn’t always have to be a lesson or a silver lining in the disability experience — sometimes it just is what it is
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Cassandra Rush is a lupus advocate born and raised in Los Angeles, CA. In 2012, after a two-year battle with an undiagnosed illness due to being uninsured, she was finally diagnosed with Systemic Lupus Erythematosus (lupus SLE). Two years later she was diagnosed with lupus nephritis. An “accidental advocate”, she speaks out about the broken US healthcare system, with a particularly detailed lens on medical racism and systemic bias. She was recently selected as a subject in the documentary series Trust Me, I’m Sick (now streaming on SoulPancake), wherein she shares about her life with lupus. And she’s on the pod to tell us even more.
Tune in as Cass shares:
how she was gaslit at the early onset of her illness that she was 22 when she first got sick that her diagnosis has brought her to the brink of her own mortality how her battles with health insurance have caused emotional distress over ongoing debt how her diagnosis brought her closer with her mom how her diagnosis has affected her mental health how the COVID pandemic has played into systemic ableism how her diagnosis has affected her plans for the future the irony that accommodations have readily been made available in the workplace because of the pandemic, but that the disabled community has been requesting them for decades access issues in healthcare, from financial obligation to racism
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Faith Ashenden is the founder and CEO of That Healing Feeling. She is a global patient empowerment mentor, master mindset coach, and biohacking expert who helps women hack the system and get their health back holistically, using 1-1 coaching, online courses, a podcast, and social media accounts with over 40k+ followers. Faith empowers people to ask the right questions, bust through limiting beliefs, detox their environments and bodies, and start using food as medicine. She’s also overcome Graves’ disease and Adderall addiction…and she’s on the show to share her story!
Tune in as Faith shares:
that she underwent radioactive iodine treatment for Graves’ disease that she has also healed her gut from Candida and SIBO, and her immune system from EBV — all through holistic methods how she developed Adderall addiction, and kicked the habit why her Graves’ disease was so difficult to diagnose how she’s detoxed her day-to-day and reorganized her life with her wellness as a priority why the root-cause approach to healing is so important to her — and why it can be financially inaccessible to many some suggestions to switch-and-ditch and reduce daily toxin exposures in your home and life
This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com/subscribe - Visa fler
