Podcast terbaik Invisible Disease (2024)

1
Living with Lupus and The Impact of Invisible Diseases on Mental Health - with Amanda Chay 42:22

10M ago42:22

42:22

Amanda, a resilient and determined advocate for invisible diseases, embarks on a mission to shatter misconceptions, forge connections, and reclaim her identity amidst the isolating journey of chronic illness. She has firsthand experience living with lupus, an incurable autoimmune disease. After going undiagnosed for 21 years, Amanda has gained a de…

1
Living with Ulcerative Colitis: Saffron Cassady's Documentary Explores Fecal Transplantation 37:24

10M ago37:24

37:24

Get ready to meet Saffron Cassady, a talented filmmaker and an incredible woman who has been living with ulcerative colitis since her early twenties. With her background in filmmaking, Saffron took her personal experiences with chronic illness and turned them into a powerful documentary. She dives deep into the world of alternative treatments for u…

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Living with Lyme Disease and the Power of Functional Diagnostic Nutrition: Meet Heather Gray 43:29

1y ago43:29

43:29

Unlocking the Hidden Secrets of Your Health: The Power of Functional Testing with Heather Gray Struggling with relentless health issues that seemed to have no cure, Heather Gray's life was a constant battle. From Lyme disease at 13 to severe neurological problems, she felt abandoned by the Western medicine system. But just when she thought all hope…

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Living with Chronic Renal Failure- Meet Jenna Swanson 34:46

1y ago34:46

34:46

Advanced Directives and Advocacy: Jenna Swanson's Journey with Chronic Illness Join resilient nurse Jenna Swanson as she battles Vesicoureteral Reflux and Chronic Kidney Disease, advocating for self-care and self-advocacy amidst the trauma and isolation of living with chronic illness. It's time-consuming. It's embarrassing. My special guest is Jenn…

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Living with Crohn's Disease & Raising Neurodivergent Children - Meet Sarah Young 36:19

1y ago36:19

36:19

Managing Chronic Illness as a Special Needs Mom with Sarah Young Sarah Young's life seemed destined for struggle, from her childhood diagnosis of Crohn's disease to raising a neurodivergent child. But what's surprising is how she found the strength to persevere and thrive. Through her journey, she discovered the importance of self-care for special …

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Healing Together: The Benefits of Connecting with Others on the Invisible Disease Journey 29:20

1y ago29:20

29:20

Healing Together: The Benefits of Connecting with Others on the Invisible Disease Journey Does this sound familiar? You're struggling with an invisible disease, feeling alone and isolated. You've been told to just tough it out or stay positive, but it's not helping. In fact, it's making you feel even more frustrated and misunderstood. The pain of b…

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The Importance of Diverse Representation in Clinical Trials 1:08:24

1y ago1:08:24

1:08:24

On this episode, I will be speaking with Erica Courtenay-Mann, an advocate for patients with Sarcoidosis. She gives talks regarding what it's like to live with chronic illnesses & she is involved in the Women of Color Committee and the ACTe Now! Patient Committee. She is a strong voice to raise awareness about the importance of clinical trials, esp…

1
Living with Chronic Lymphocytic Leukemia- Meet Julie Fry 51:32

1y ago51:32

51:32

Julie Fry's Journey: Living with Chronic Lymphocytic Leukemia Are you looking for a way to cultivate emotional wellbeing and positivity? Julie Fry is here to share her insight on how to promote joy and self-care through gratitude practices. In this episode, you will be able to: Master the complexities of chronic lymphocytic leukemia diagnosis and t…

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How a Supportive Community Can Help You Thrive with Invisible Diseases 31:59

1+ y ago31:59

31:59

Does this sound familiar? You're struggling with an invisible disease, feeling alone and isolated. You've been told to just tough it out or stay positive, but it's not helping. In fact, it's making you feel even more frustrated and misunderstood. The pain of being dismissed and unsupported can be overwhelming. But there's hope. Finding a supportive…

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Living with Gastroparesis- A Healing Journey with River Staines 35:25

1+ y ago35:25

35:25

Unlocking Emotional Healing with River Staines: A Chronic Illness Journey River Staines was just 22 and facing an incurable chronic illness. With numerous healing modalities and a newfound gift for energy work, she was determined to not accept her fate. Against all odds, her remarkable strength and resilience allowed her to heal herself and find he…

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Surviving Guillain-Barre Syndrome- Meet Holly Frances 38:04

1+ y ago38:04

38:04

Unraveling Guillain-Barre Syndrome with Holly Frances: A Mother's Journey Paralyzed just weeks after giving birth to her first child, Holly Frances struggles to adjust to her new reality as she courageously battles Guillain-Barre Syndrome with the help of her inspiring support system and a conquering spirit. In this episode, you will be able to: Di…

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Living with Chronic Fatigue Syndrome- Meet Sue Jackson 36:54

1+ y ago36:54

36:54

Suzan Jackson is a freelance writer whose work focuses on topics related to health, family, travel, and media reviews and has appeared in many magazines, websites, and anthologies. She has had ME/CFS, an immune disorder, since 2002, and also has Lyme disease. Both of her sons also became ill with ME/CFS in 2004, at ages 6 and 10. Her younger son is…

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Living with MS- Meet Heather Russell-Kay 42:30

1+ y ago42:30

42:30

Living with chronic illness can be hard, but finding support and understanding makes all the difference. "It is one of those things that when I was first diagnosed, they were like, everyone knows someone with Ms, but I knew absolutely no one. I had no idea about the condition or that it was actually diagnosed quite young in people at all." Heather …

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Living with Familial Adenomatous Polyposis and Short Bowel Syndrome- Meet Jenny Jones 30:22

1+ y ago30:22

30:22

After Jenny Jones is wrongly dismissed as a "whiny child" with chronic abdominal pain, she discovers she has two rare diseases, undergoes multiple surgeries, and fights for the rights of children with rare diseases to receive the necessary health care. "If you arm yourself with the information and you don't hesitate to ask questions, you don't hesi…

1
Living with DYS- Interview with Ambre Minty 28:57

1+ y ago28:57

28:57

"Unlock your inner strength and experience the power of resilience with a chronic illness journey that is truly iconic." "My health may be chronic, but this ass is iconic."- Ambre Minty Ambre Minty is a mum and chronic illness warrior, patient leader, feeding tube advocate, and Oley ambassador. She has been diagnosed with dysautonomia, gastropresis…

1
We are officially live! 26:36

1+ y ago26:36

26:36

After being diagnosed with an Invisible Disease, two moms battle the physical and emotional roller coaster of chronic illness while also advocating for others and striving to create a community of support. Learn about Advocating for Invisible Disease through listening to two mothers living with chronic illness. This podcast discusses grieving physi…

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Bitter Bettys 25:21

1+ y ago25:21

25:21

In this episode of My Invisible Disease, Jenny and Kassy are Bitter Bettys. With chronic illness and a short fuse, they desperately seek to strike a balance between protecting themselves, maintaining empathy and compassion, and avoiding petty complaints as they navigate the holidays and a mountain of obligations. This episode is about Self-reflecti…

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Caregiving, Support and Romance in Invisible Disease 26:24

1+ y ago26:24

26:24

Join us on our journey as we navigate the ups and downs of living with Invisible Disease and finding our balance with our partners and caregivers." This episode was about Caregiving and support, and how I learned that it is important to provide grace to both yourself and your partner when managing a chronic illness. I also learned that it is import…

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Asking For Help 21:11

1+ y ago21:11

21:11

Do you know someone living with an Invisible Disease? How about someone who had to make the difficult decision to go public with their medical condition? Join us as we explore the difficult decision of going public with an Invisible Disease and the courage it takes to do so. Through our stories, we will uncover the emotional turmoil of facing an un…

1
Kassy's Story 1:03:14

1+ y ago1:03:14

1:03:14

Kassy Draper, a working mother of two who was leading a busy real estate career until she started experiencing chronic illness symptoms. After many inconclusive tests, she was put on a 10-day cycle of Prednisone to help manage her symptoms. She soon noticed a drastic weight loss, and she was struggling to keep up with her work and home life. On her…

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Introduction Episode 21:22

1+ y ago21:22

21:22

Invisible Disease is a podcast about the struggles of two moms living with chronic illness and the hacks they use to get through their day-to-day lives. "But also, I think there's just not enough of it right now. People don't know where to go. And I think when you can share and sometimes be vulnerable and sometimes put your dirty laundry out there,…

1
Jenny's Story 51:01

1+ y ago51:01

51:01

For Jenny, the effects of chronic illness have been part of her life since childhood - her grandfather died of complications with his liver and her mother was the first in their family to undergo a liver transplant. But it wasn't until Jenny was 15 that she was officially diagnosed with polycystic kidney and liver disease. The lack of education in …

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Cerebral Cavernous Malformations & The Breaking Barriers Initiative - Interview with Dr. Vegas Brown 57:01

2y ago57:01

57:01

In this episode, I will be talking to Dr. Vegas Brown about Cerebral Cavernous Malformations and the Breaking Barriers for Black Health Empowerment initiative to help address the disparities that still plague the Healthcare System, especially for black Americans that have a rare disease. Photo Credit - Integra LifeSciences Angioma Alliance - https:…

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Sarcoidosis: Disparities in Healthcare & the Importance of Diversity in Clinical Trials 1:09:22

2y ago1:09:22

1:09:22

Photo Credit - pulmonaryhypertensionnews.com In this episode, I will be interviewing Dr. Divya Patel. She works closely with Sarcoidosis patients and the work that she and so many other doctors do is important for recognition of this terrible disease. I have seen this disease first-hand. Ten years ago, my sister died from complications from one of …

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Moderna Sues Pfizer & BioNTech for Patent Infringement over Covid-19 Vaccine Tech 49:18

2y ago49:18

49:18

Moderna Sues Pfizer & a collaborator of the Pfizer vaccine for patent infringement using MRNA technology which Moderna held patents for. Moderna had allowed other companies to use their technology during the pandemic, but is looking for "royalties" to state it simply for sales of the vaccine from a certain date, except for sales made to the US gove…

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Health Insurance Bias - Price, Negotiations, and Lawful Bias 34:08

2y ago34:08

34:08

I've learned a few more things about insurance and how things are handled regarding the Affordable Care Act, prices that providers charge, and how this can lead to bias, whether conscious or unconscious. Contact Info: Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 |…

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I'm Back! Observations About Access to Healthcare Over the Past Few Months 46:45

2y ago46:45

46:45

I will provide updates as well as some new insight to some parts of the healthcare system as I have unfortunately experienced them over the past few months. The disparities seem to be getting worse, and to me, I think it is impossible to even fathom the long-term impacts that these severe shortcomings have on patients and future generations. Contac…

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Update 3:15

2y ago3:15

3:15

Hi everyone. I know it's been awhile since I've done a new episode, but I'll be back shortly. I hope to have an episode out in the next two weeks. Hope everyone has been well. Talk to you soon.

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Healthcare Inequities and Disparities Pt. 4 48:33

2+ y ago48:33

48:33

First, thank you all for your patience. My family and I had Covid. Thanksgiving was spent in quarantine and I'm still not 100% (but really, I haven't been 100% in years) but I'm slowly getting there. Also, I will be moving the podcast to a new host. I currently pay monthly for this host, but I'm finding that is not really feasible to continue. I wi…

1
Healthcare Inequalities and Disparities 37:19

3y ago37:19

37:19

We continue to review healthcare disparities and inequalities within our healthcare system and look at reasons why they may exist and what we can do to try to erase them. Contact Info: Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Website: SeetheInvisibl…

1
Healthcare Disparities - Baselines and Clinical Trials 46:02

3y ago46:02

46:02

Part 2 of our series on addressing healthcare disparities: We will review what baselines are and how they can impact clinical trials, as well as begin to discuss why it is important that clinical trials include people of all backgrounds. Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: S…

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Healthcare Disparities - Key Points 42:06

3y ago42:06

42:06

This episode will begin the series on address healthcare disparities and accessibility. This will be a multi-part series as there is a wealth of items that need to be addressed, and in this case, wealth is not good. This episode will review key points and information for understanding what the next episodes hold and why addressing these now is not …

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Safe Classroom - Part 2 29:12

3y ago29:12

29:12

Part 2. We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year. This episode will concentrate on keeping our kids healthy Contact: Email: Seetheinvisible2020@gmail.com Twitter: R…

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Back to School - Safety Pt. 2 31:34

3y ago31:34

31:34

Part 2. We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year. This episode will concentrate on transportation tips. Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda…

1
Safe Classrooms Part 1 16:14

3y ago16:14

16:14

We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year. This episode will concentrate on keeping our kids healthy Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F J…

1
Back to School - Safety Pt. 1 37:54

3y ago37:54

37:54

We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year. This episode will concentrate on transportation tips. Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jeffe…

1
School Opening and Mask Mandates - an Opinion 32:10

3y ago32:10

32:10

This episode is completely about my experiences and thoughts as my children get ready to start the new school yeat with a new Variant, Delta,, of Covid 19 starting to surge. Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Instagram: Ronda Jefferson (@seeth…

1
Navigating the Skies with Allergies & Asthma 41:35

3y ago41:35

41:35

Today I am reviewing some events that have happened to those with allergies and/or asthma while flying. This topic is very concerning to me as I have worried about what will happen if I need to fly, but an animal that I am allergic to is on the plane? And for clarity, I’m not referring to Service Animals but to pets. This topic can create hardships…

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Asthma, Allergies and Travel 37:27

3y ago37:27

37:27

Asthma, Allergies and Travel. These words can strike fear in those who have to encounter all of these together. I will go over tips in this episode on how to make a trip safer. Note - I used the word "safer" because in some instances, even if you've taken appropriate steps, dander and other allergens can travel on other people's clothes. Contact: E…

1
Asthma, Allergies and the ADA 28:23

3y ago28:23

28:23

Today I will explore how the ADA addresses Asthma and Allergies. Some may not realize that both Asthma and Allergies are considered disabilities and protected under the Abilities with Disabilities Act. Links to information regarding the ADA are in the description below. Source: Are Asthma and Allergies Disabilities? | AAFA.org ADA Information: ADA.…

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Living with Asthma Pt. 4 - Asthma and Pregnancy 35:06

3y ago35:06

35:06

Today I will review some of the information regarding when you're pregnant and have asthma. Source: https://www.aafa.org/asthma-during-pregnancy/ Disclaimer: I am in no way a medical, insurance or legal expert. If you have any questions in those areas, please be sure that you contact a specialist in that field. I will discuss topics or articles tha…

1
Exploring Asthma Pt. 3 32:22

3y ago32:22

32:22

In part 3 of exploring Asthma, we look at what to look for in an infant or toddler who may have asthma. Disclaimer: I am in no way a medical, insurance or legal expert. If you have any questions in those areas, please be sure that you contact a specialist in that field. I will discuss topics or articles that I have found on publicly accessible mean…

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Exploring Asthma Pt. 2 39:40

3y ago39:40

39:40

We continue to explore Asthma in this episode, as well as take more of a look at accessibility. There are different types of Asthma and the recognition of which type of a patient has is very important in treatment. The statistics on the impact of Asthma are staggering in loss of school, work, medical costs, and most importantly, human life. I know …

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Exploring Asthma Pt. 1 41:44

3y ago41:44

41:44

We start to explore Asthma in this episode. There are different types of Asthma and the recognition of which type of a patient has is very important in treatment. The statistics on the impact of Asthma are staggering in loss of school, work, medical costs, and most importantly, human life. I know that I found many of these statistics a surprise and…

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Life with Allergies Pt. 4 43:56

3y ago43:56

43:56

This series of episodes explore an invisible illness that many people suffer and survive with but that many don’t actually consider an illness. Allergies. Allergies are more than an inconvenience, just watery eyes or runny nose. These can be life-threatening and need attention so that others are aware. This episode will focus on life as an adult, n…

1
Life with Allergies Pt. 3 43:39

3+ y ago43:39

43:39

This series of episodes explore an invisible illness that many people suffer and survive with but that many don’t actually consider an illness. Allergies. Allergies are more than an inconvenience, just watery eyes or runny nose. These can be life-threatening and need attention so that others are aware. This episode with focus on recent High School …

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Life With Allergies Part 2 43:44

3+ y ago43:44

43:44

This episode explores an invisible illness that many people suffer and survive with but that many don’t actually consider an illness. Allergies. Allergies are more than an inconvenience, just watery eyes or runny nose. These can be life-threatening and need attention so that others are aware. Contact: Email: Seetheinvisible2020@gmail.com Twitter: R…

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Life with Allergies Part 1 21:06

3+ y ago21:06

21:06

This episode explores an invisible illness that many people suffer and survive with but that many don’t actually consider an illness. Allergies. Allergies are more than an inconvenience, just watery eyes or runny nose. These can be life-threatening and need attention so that others are aware. Contact: Email: Seetheinvisible2020@gmail.com Twitter: R…

1
Caring for the Caregiver Pt.2 48:36

3+ y ago48:36

48:36

Also, Facebook will not allow me to boost posts because it says that they need to make sure that it is me, to verify my identity. If you enjoy the podcast, please share with those that you think may enjoy it as well.Contact: Email: Seetheinvisible2020@gmail.comTwitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Fa…

1
Caring for the Caregiver 33:06

3+ y ago33:06

33:06

Today I will start the topic of taking care of our caregivers. Our loved ones do so much for us, and we need to show appreciation and try to understand what they do and the roles that they play in our lives. We also want to take care of their needs. If their needs aren’t met, then they also won’t be able to care for us.…

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