I want to share information about living with and dealing with a chronic or invisible disease. This is made even more difficult if the disease is rare. I'll share my story and also invite some guests to share their viewpoints and experiences. There are hundreds of different types of diseases out there that are invisible and can the sufferer feel more alone. I'm hoping to help the patient, families and other support systems better communicate and empathize with each other. ***Disclaimer - Thi ...
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The Importance of Diverse Representation in Clinical Trials
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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…
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Cerebral Cavernous Malformations & The Breaking Barriers Initiative - Interview with Dr. Vegas Brown
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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
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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
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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
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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
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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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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
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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…
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Healthcare Inequalities and Disparities
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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…
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Healthcare Disparities - Baselines and Clinical Trials
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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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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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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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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…
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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…
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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…
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School Opening and Mask Mandates - an Opinion
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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…
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Navigating the Skies with Allergies & Asthma
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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. 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…
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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
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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…
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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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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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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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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…
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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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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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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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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…
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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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We have probably all been there. The doctor is not listening to us, and we are left feeling frustrated, unheard and still suffering from the symptoms that our doctor won't believe. In this episode I will share some of my experiences on this as well as provide some feedback from others. Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F …
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I explore the difference between Autoimmune and Autoinflammatory illnesses. I admittedly used to use these terms interchangeably until I found out that they were different. It's important to know the differences to try to reach a quicker diagnosis as well as determine best treatment plans. Allstripes blog: https://www.allstripes.com/blog/twelve-rar…
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I will be looking at what it means for an illness to be "invisible" and if aspects of the illness are actually visible, but some people may misjudge a person or situation based on societal norms or expectations. Invisible Disabilities: List and General Information : Disabled World (disabled-world.com) Email: Seetheinvisible2020@gmail.com Twitter: R…
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While I did not expect to do a topic related to Covid so quickly, while researching other topics, I did come across interesting articles regarding Orphan Diseases and how Covid has changed the outlook of research into these disorders. There was also an article about the cost of a rare disease in comparison to others. EveryLife Foundation for Rare D…
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I originally thought that this series would have 3 parts, but instead, I made a slightly longer video and only have 2. I shared observations of how medical or tracking apps work, the pros and cons, as well as how I felt about word choices in one particular article. Contact Info: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInv…
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I start a 3 part (at least) series on the pros and cons of health apps and tech, oversight of these devices, and if we are becoming reliant on them. Contact Info: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Website: SeetheInvisible2020.com – Dare to be seen! In…
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In this episode I review the impact that social media has had on Mental Health, especially during Covid-19. Contact Info: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Website: SeetheInvisible2020.com – Dare to be seen! Instagram: Ronda Jefferson (@seetheinvisibl…
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I continue to discuss the differences in the 1918 Pandemic and the current one. This will be the last episode of this particular series. ADA information: https://www.kppblaw.com/2020-ada-compliant-website-requirements/#:~:text=%20Website%20Compliance%20with%20ADA%20for%202020%20,important%20images%20on%20a%20website%20must...%20More%20 Contact Info…
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I continue to discuss the differences in the 1918 Pandemic and the current one. There will be a part 4. ADA information: https://www.kppblaw.com/2020-ada-compliant-website-requirements/#:~:text=%20Website%20Compliance%20with%20ADA%20for%202020%20,important%20images%20on%20a%20website%20must...%20More%20 Contact Info: Email: Seetheinvisible2020@gmai…
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I continue to discuss the differences in the 1918 Pandemic and the current one. There will be a part 3. Contact: Contact Info: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Website: SeetheInvisible2020.com – Dare to be seen! Instagram: Ronda Jefferson (@seetheinv…
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This episode will be a little bit of a history lesson. I learned a lot researching the misnamed "Spanish Flu" Pandemic and seeing where we've learned from that pandemic in some ways, but also repeated history in others In future episodes, I will look at socio-economic factors, how technology has helped in ease of communication, the willingness of m…
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In this episode, I review some personal experiences that helped shape how I react to certain situations, sometimes not always the best way. But I do try to learn from these. Some of these experiences helped drive me to start this podcast. I also recorded this episode to upload to YouTube if you prefer to listen. Contact Info: Email: Seetheinvisible…
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In the second part of this episode, we will finish the story of my journey to the diagnosis. Our journeys to find out our actual diagnosis may take years. During that time, we suffer through physical, emotional and mental pain, but because science has not put a name on it, it doesn't seem to exist. But it does, and it is creating challenges for us …
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Our journeys to find out our actual diagnosis may take years. During that time, we suffer through physical, emotional and mental pain, but because science has not put a name on it, it doesn't seem to exist. But it does, and it is creating challenges for us everyday. While I always say that I want to focus on being positive, I think that it is impor…
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There are so many things that we must overcome daily, things that are specific to us as individuals, specific to us as a community, and specific to our illness. While there are some differences, let's first take a look at some of the obstacles that we face on a daily basis. Source: Invisible Illness – 7 Ways To Get Past The Injustices and Challenge…
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This episode will showcase my thoughts on a "visible" invisible disease. There is so much judgement on this topic, even from medical professionals. Unlike other conditions, some people still consider it socially acceptable to judge those who are obese, even if they have a known health condition that impacts their weight. All people deserve to have …
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There are so many things that we must overcome daily, things that are specific to us as individuals, specific to us as a community, and specific to our illness. While there are some differences, let's first take a look at some of the obstacles that we face on a daily basis. Source: Invisible Illness – 7 Ways To Get Past The Injustices and Challenge…
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Last Episode on Being Your Own Health Advocate
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I finish up my series about some of the best ways that we can become our own advocate. Source: US News Article 6 Ways to Be Your Own Health Advocate | For Better | US News Contact Info: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Website: SeetheInvisible2020.co…
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Life is hectic. Stressors can build up. It's so important to take time for yourself. You deserve it! Let's explore how important self care is to everyone. Contact Info: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Website: SeetheInvisible2020.com – Dare to be se…
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The second part of Understanding Insurance reviews different types of insurance plans and what to look for within each plan. Sources: HMO vs PPO vs Other Plans:What's the Difference? | Insurance.com HMO, PPO, EPO, POS: Which Plan Is Best? (verywellhealth.com) Contact: Seetheinvisible2020@gmail.com (2) SeetheInvisible2020 | Facebook https://twitter.…
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Like it or not, we all have to deal with insurance. There are so many different parts of insurance as well as numerous insurance plans, it's hard to keep track of how it works. While the specifics can vary, there are a few key pieces of information that everyone should know. I hope that this information helps. I also have started a petition on Chan…
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