See the Invisible: Living with an Invisible or Rare Disease
By Ronda F Jefferson
See the Invisible: Living with an Invisible or Rare DiseaseAug 11, 2022
The Importance of Diverse Representation in Clinical Trials
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, especially in communities that are underrepresented. With each step taken towards more inclusive clinical trials and the data gained from them, we grow closer to a better understanding of how “snowflake" diseases progress.
Links for further information:
https://www.stopsarcoidosis.org/
Mayo Clinic - Information on Clinical Trials and Sarcoidosis Research
Contact Info -
Podcast: See the Invisible: Living with an Invisible or Rare Disease
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Cerebral Cavernous Malformations & The Breaking Barriers Initiative - Interview with Dr. Vegas Brown
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://www.alliancetocure.org/
Breaking Barriers - https://www.blackccm.org/
Cavernous malformations - Symptoms and causes - Mayo Clinic - https://www.mayoclinic.org/diseases-conditions/cavernous-malformations/symptoms-causes/syc-20360941
Cavernous malformation and the Breaking Barriers Initiative - https://rarerevolutionmagazine.com/cavernous-malformation-and-the-breaking-barriers-initiative/
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 (@seetheinvisible2020) • Instagram photos and videos
Sarcoidosis: Disparities in Healthcare & the Importance of Diversity in Clinical Trials
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 the forms of sarcoidosis.
It is extremely important that clinical trials are performed in order to advance the treatment of not only sarcoidosis, but all rare diseases. Just as important is to make sure that all people are represented. Black people are significantly underrepresented in clinical trials, not only in the U.S. but in many other countries. We will be discussing what these trials are and why it is so important to have all people represented.
"Dr. Patel is a Clinical Associate Professor of Pulmonology and Director of the Sarcoidosis and ILD Programs at the University of Florida. The focus of her career is to improve the care of patients who are critically ill and have chronic pulmonary conditions such as sarcoidosis and interstitial disease. She has a special interest in understanding how sarcoidosis affects patients from underrepresented backgrounds and the obstacles they face in accessing care. Having completed specialized training, she participates in clinical research with the aim to improve the quality of life of patients."
Important Resources:
http://www.stopsarcoidosis.org/ACTNow (Survey)
http://www.stopsarcoidosis.org.
https://www.lung.org/lung-health-diseases/lung-disease-lookup/sarcoidosis
https://www.nhlbi.nih.gov/health/sarcoidosis
www.rarediseases.org
Moderna Sues Pfizer & BioNTech for Patent Infringement over Covid-19 Vaccine Tech
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 government and to some less wealthy countries.
Sources:
Moderna Sues Pfizer and BioNTech Over Covid Vaccine Technology - The New York Times
The Orphan Drug Act: Restoring the Mission to Rare Diseases : American Journal of Clinical Oncology.
The Orphan Drug Act: Implementation and Impact (OEI-09-00-00380
Countries urge drug companies to share vaccine know-how | AP News
https://www.bmj.com/content/377/bmj.o1086
What are the difference between patent and generic medicine?
Drug Patent Life: How Long Do Drug Patents Last? – DrugPatentWatch - Make Better Decisions.
From evergreening to thicketing: exploring the manipulation of pharma patents
Contact Info:
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
Photo Credit
SpencerBDavis1
https://pixabay.com/images/id-6165772/
Health Insurance Bias - Price, Negotiations, and Lawful Bias
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 | Facebook
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
https://www.listennotes.com/da/podcasts/see-the-invisible/healthcare-disparities-09VdwJcNRz8/
https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care
http://www.healthcompassmilwaukee.org/tiles/index/display?alias=inequity
https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm
I'm Back! Observations About Access to Healthcare Over the Past Few Months
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.
Contact Info:
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
https://www.listennotes.com/da/podcasts/see-the-invisible/healthcare-disparities-09VdwJcNRz8/
https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care
http://www.healthcompassmilwaukee.org/tiles/index/display?alias=inequity
https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm
Update
Healthcare Inequities and Disparities Pt. 4
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 will be moving it to a no-charge host. I will keep it on this host until at least 12/24 but then will move it. It should not cause any issues in the long term. Possibly during a 24 hour period there may be some lag in updating from one host to the other, but the new host (supposedly) is supposed to be able to keep the same feed for the podcast. The only thing that would change is if you did try to access the Podbean Website directly If you use a podcast app, not should change, hopefully.
So this episode will continue the series on inequities in Healthcare. As the new year approaches, and many people needing to change insurance for one reason or another, and deductibles resetting even if you are keeping the same insurance, many of us will face difficulties in navigating our healthcare over the next few months at least.
Contact Info:
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
https://www.listennotes.com/da/podcasts/see-the-invisible/healthcare-disparities-09VdwJcNRz8/
https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care
http://www.healthcompassmilwaukee.org/tiles/index/display?alias=inequity
https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm
Healthcare Inequalities and Disparities
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: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
https://www.listennotes.com/da/podcasts/see-the-invisible/healthcare-disparities-09VdwJcNRz8/
https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care
http://www.healthcompassmilwaukee.org/tiles/index/display?alias=inequity
https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm
Healthcare Disparities - Baselines and Clinical Trials
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: SeetheInvisible2020 | Facebook
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
https://pharpoint.com/resources/the-history-of-clinical-trials/
https://health.gov/healthypeople/objectives-and-data/about-objectives
https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149409/
https://pharmaceutical-journal.com/article/feature/why-we-need-to-talk-about-sex-and-clinical-trials
https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care
Healthcare Disparities - Key Points
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 only important, it is imperative.
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
https://www.aafa.org/
https://www.healthypeople.gov/2020/about/foundation-health-measures/Disparities
https://www.nature.com/articles/s41746-020-0290-y#Sec14
Safe Classroom - Part 2
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: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Source:
https://sites.ed.gov/roadmap/parent-checklist/#school
https://www.cdc.gov/coronavirus/2019-ncov/community/schools-childcare/k-12-guidance.html
Back to School - Safety Pt. 2
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 F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
https://www.nsc.org/home-safety/seasonal-safety/back-to-school
https://dsp.delaware.gov/2021/08/24/127396/
https://www.metrofamilymagazine.com/top-10-tips-for-school-safety/
Safe Classrooms Part 1
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 Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Source:
Back to School - Safety Pt. 1
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 Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
https://www.nsc.org/home-safety/seasonal-safety/back-to-school
https://dsp.delaware.gov/2021/08/24/127396/
https://www.metrofamilymagazine.com/top-10-tips-for-school-safety/
School Opening and Mask Mandates - an Opinion
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 (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Navigating the Skies with Allergies & Asthma
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 for all parties. Those with allergies are in a position that will prevent them from being able to fly. Those who want to bring their pet will have to find alternative means, and those who have Emotional Support Animals will find it difficult to fly as well. Compassion, empathy and respect are truly needed at times when these situations align themselves, and we should all work together to try to find ways to accommodate as many people as possible. And this is not only true in just these specific instances, but in so many other avenues of life that we face everyday.
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Image by Chrisjmit https://www.instagram.com/motion_forge_cjm/
Sources:
https://www.aafa.org/traveling-with-asthma-allergies/
Asthma, Allergies and Travel
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: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
https://www.aafa.org/traveling-with-asthma-allergies/
https://www.aarp.org/travel/travel-tips/safety/info-2019/flying-with-allergies.html
Asthma, Allergies and the ADA
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 Designated Investigative Services
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 means. Any opinion discussed is based on my experiences and my understanding of that particular topic and how it pertains to my life with my illness. It is not meant to, and should not be, used in place of any medical advice.
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Living with Asthma Pt. 4 - Asthma and Pregnancy
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 that I have found on publicly accessible means. Any opinion discussed is based on my experiences and my understanding of that particular topic and how it pertains to my life with my illness. It is not meant to, and should not be, used in place of any medical advice.
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Exploring Asthma Pt. 3
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 means. Any opinion discussed is based on my experiences and my understanding of that particular topic and how it pertains to my life with my illness. It is not meant to, and should not be, used in place of any medical advice.
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
Exploring Asthma Pt. 2
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 that I found many of these statistics a surprise and many of these issues need to be addressed.
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources
https://languages.oup.com/google-dictionary-en/
https://www.aafa.org/asthma-facts/
What Are The Different Types Of Asthma?
https://asthma.net/types/allergies
https://acaai.org/asthma/types-asthma/nonallergic-asthma
https://www.aafa.org/asthma-capitals/
https://www.mnn.com/health/allergies/stories/6-types-of-asthma-and-how-theyre-treated
accessmedicine.mhmedical.com/content.aspx?sectionid=249369743
https://www.thoracic.org/patients/patient-resources/resources/allergic-bronchopulm-aspergillosis.pdf
https://asthma.net/types/aspirin-induced
https://www.webmd.com/asthma/guide/adult-onset-asthma
https://link.springer.com/chapter/10.1007/978-1-4614-4292-9_7
https://www.mayoclinic.org/diseases-conditions/exercise-induced-asthma/symptoms-causes/syc-20372300
https://www.webmd.com/asthma/guide/cough-variant-asthma
Exploring Asthma Pt. 1
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 many of these issues need to be addressed.
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
https://languages.oup.com/google-dictionary-en/
https://www.aafa.org/asthma-facts/
What Are The Different Types Of Asthma? https://www.aafa.org/asthma-capitals/https://www.mnn.com/health/allergies/stories/6-types-of-asthma-and-how-theyre-treated
accessmedicine.mhmedical.com/content.aspx?sectionid=249369743
Life with Allergies Pt. 4
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, navigating the world of leisure, love, and work.
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
If you're interested in a podcast that explores true crime, tragedies and understanding why events happened to try to prevent them from happening again, check out this podcast.
Danger on Delmarva Podcast: https://www.podbean.com/pu/pbblog-cxf4i-b515fd
Sources:
Asthma and Allergy Foundation of America | AAFA | Home
Food Allergy & Anaphylaxis Connection Team | Campaign Home (foodallergyawareness.org)
https://www.foodallergyawareness.org/education/adults-with-food-allergies/shopping-cooking-eating/
https://www.foodallergyawareness.org/education/adults-with-food-allergies/socializing-with-friends/
https://www.foodallergyawareness.org/education/adults-with-food-allergies/dating-and-relationships/
https://www.foodallergyawareness.org/education/adults-with-food-allergies/shared-living-spaces/
https://www.foodallergyawareness.org/education/allergy-related-organizations/
Petition for Epipen affordability/access: http://chng.it/PYxts4wvNY
Petition for Diabetic Medical Supplies Affordability: http://chng.it/wvDV49qmxT
Life with Allergies Pt. 3
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 graduates and how they must navigate a new world either in the workplace or college.
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
If you're interested in a podcast that explores true crime, tragedies and understanding why events happened to try to prevent them from happening again, check out this podcast.
Danger on Delmarva Podcast: https://www.podbean.com/pu/pbblog-cxf4i-b515fd
Sources:
Asthma and Allergy Foundation of America | AAFA | Home
Food Allergy & Anaphylaxis Connection Team | Campaign Home (foodallergyawareness.org)
Petition for Epipen affordability/access: http://chng.it/PYxts4wvNY
Petition for Diabetic Medical Supplies Affordability: http://chng.it/wvDV49qmxT
Life With Allergies Part 2
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: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Danger on Delmarva Podcast: https://www.podbean.com/pu/pbblog-cxf4i-b515fd
Sources:
Asthma and Allergy Foundation of America | AAFA | Home
Food Allergy & Anaphylaxis Connection Team | Campaign Home (foodallergyawareness.org)
Petition for Epipen affordability/access: http://chng.it/PYxts4wvNY
Petition for Diabetic Medical Supplies Affordability: http://chng.it/wvDV49qmxT
Life with Allergies Part 1
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: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
Asthma and Allergy Foundation of America | AAFA | Home
Food Allergy & Anaphylaxis Connection Team | Campaign Home (foodallergyawareness.org)
Petition for Epipen affordability/access: http://chng.it/PYxts4wvNY
Petition for Diabetic Medical Supplies Affordability: http://chng.it/wvDV49qmxT
Caring for the Caregiver Pt.2
Contact: Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
Caregiver stress: Tips for taking care of yourself - Mayo Clinic
Supporting the Supporters: What Family Caregivers Need to Care for a Loved One With Cancer | JCO Oncology Practice (ascopubs.org)
8 Strategies to Help You Care for Your Loved One | Depend®
The 5 Caregiver Commandments: How to Support a Loved One with Invisible Illness (mindovermenieres.com)
PSC Caregiver Information | Common Caregiver Questions | PSC Partners
Caring for the Caregiver
When Your Doctor Won't Listen
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 Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube: SeeTheInvisible - YouTube
Sources:
How Do You Get Your Doctor to Listen to You | Health.com
Adult-onset Still's disease - Wikipedia
Adult-Onset Still's Disease: Symptoms & Treatment (clevelandclinic.org)
13 Ways to Get a Doctor to Take Your Pain (Very, Very) Seriously (healthline.com)
Steps to take when your doctor doesn’t listen to you - Clara Health
I’m an Expert on My Own Body — So Why Aren’t Doctors Listening? (healthline.com)
How to Get Your Doctor to Take You Seriously | by Kate Willsky | Elemental (medium.com)
Autoimmune vs. Autoinflammatory
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-rare-disease-podcasts-we-love-that-are-still-making-new-episodes
Contact:
Email: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube:
Sources:
10 Facts and Statistics About Autoimmune Diseases - Scleroderma News
What Is the Difference Between an Autoinflammatory Disease and an Autoimmune Disease? | PainScale
Autoinflammatory vs. Autoimmune: What is the Difference? (saidsupport.org)
Autoinflammatory disease: The rare immune condition with waves of fever (medicalxpress.com)
List of Common NSAIDs + Uses, Types & Side Effects - Drugs.com
Glucocorticoids: List, Uses, Side Effects, and More (healthline.com)
Make the Visible Seen
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: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube:
Research and Orphan Diseases
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 Diseases
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, Study Finds (dravetsyndromenews.com)
How Covid-19 is changing rare diseases research - MedCity News
Definition of Orphan disease (medicinenet.com)
Orphan Drug Act of 1983 - Wikipedia
Health Tech Pros and Cons Part. 2
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 (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube:
https://www.medicalnewstoday.com/articles/322865
https://www.healthitoutcomes.com/doc/pros-and-cons-of-remote-patient-monitoring-0001
https://partners.wsj.com/ama/charting-change/apps-can-help-manage-chronic-diseases/
https://www.chartlogic.com/blog/how-patients-view-ehrs-the-pros-and-the-cons/
https://www.dignityhealth.org/Articles/The-Pros-and-Cons-of-Mobile-Health-Apps
https://partners.wsj.com/ama/charting-change/apps-can-help-manage-chronic-diseases/
Health Tech Pros and Cons Part 1
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!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube:
https://www.medicalnewstoday.com/articles/322865
https://www.healthitoutcomes.com/doc/pros-and-cons-of-remote-patient-monitoring-0001
https://partners.wsj.com/ama/charting-change/apps-can-help-manage-chronic-diseases/
https://www.chartlogic.com/blog/how-patients-view-ehrs-the-pros-and-the-cons/
https://www.dignityhealth.org/Articles/The-Pros-and-Cons-of-Mobile-Health-Apps
https://partners.wsj.com/ama/charting-change/apps-can-help-manage-chronic-diseases/
Social Media and Mental Health
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 (@seetheinvisible2020) • Instagram photos and videos
YouTube:
Sources:
Navigating the Coronavirus and Social Media | Psychology Today
Social media a positive mental health tool during COVID-19 | Charlotte Observer
Social Media During the Time of COVID-19 | Psychology Today
Mental Health Tools and Resources - Mental Health - CDC
1918-1920 Pandemic vs. 2020-? Part 4
I continue to discuss the differences in the 1918 Pandemic and the current one. This will be the last episode of this particular series.
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 (@seetheinvisible2020) • Instagram photos and videos
YouTube:
Sources:
How COVID-19 impacts people with disabilities (apa.org)
How Americans with disabilities can cope with the COVID-19 crisis (apa.org)
COVID-19's Impact on People with Disabilities (massgeneral.org)
COVID-19 poses unique challenges for people with disabilities | Hub (jhu.edu)
People with Disabilities | COVID-19 | CDC
How chronic illness and disability is impacted by COVID-19 | The Baylor Lariat
Coronavirus and Chronic Illness: What You Need to Know | The Mighty
https://news.un.org/en/story/2020/09/1071732
https://www.aarp.org/health/conditions-treatments/info-2020/chronic-conditions-coronavirus.html
How COVID-19 Severity is Impacted by Underlying Conditions | Time
1918-1920 Pandemic vs. 2020-? Part 3
I continue to discuss the differences in the 1918 Pandemic and the current one. There will be a part 4.
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 (@seetheinvisible2020) • Instagram photos and videos
YouTube:
Sources:
How COVID-19 impacts people with disabilities (apa.org)
How Americans with disabilities can cope with the COVID-19 crisis (apa.org)
COVID-19's Impact on People with Disabilities (massgeneral.org)
COVID-19 poses unique challenges for people with disabilities | Hub (jhu.edu)
People with Disabilities | COVID-19 | CDC
How chronic illness and disability is impacted by COVID-19 | The Baylor Lariat
Coronavirus and Chronic Illness: What You Need to Know | The Mighty
https://news.un.org/en/story/2020/09/1071732
https://www.aarp.org/health/conditions-treatments/info-2020/chronic-conditions-coronavirus.html
How COVID-19 Severity is Impacted by Underlying Conditions | Time
1918-1920 Pandemic vs. 2020-? Part 2
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 (@seetheinvisible2020) • Instagram photos and videos
YouTube:
Sources:
How COVID-19 impacts people with disabilities (apa.org)
How Americans with disabilities can cope with the COVID-19 crisis (apa.org)
COVID-19's Impact on People with Disabilities (massgeneral.org)
COVID-19 poses unique challenges for people with disabilities | Hub (jhu.edu)
People with Disabilities | COVID-19 | CDC
How chronic illness and disability is impacted by COVID-19 | The Baylor Lariat
Coronavirus and Chronic Illness: What You Need to Know | The Mighty
https://news.un.org/en/story/2020/09/1071732
https://www.aarp.org/health/conditions-treatments/info-2020/chronic-conditions-coronavirus.html
How COVID-19 Severity is Impacted by Underlying Conditions | Time
1918-20 and 2020-? Pandemics
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 much (but probably not all) of our government leaders to maintain transparency and how these factors affected containment and accessibility during each pandemic.
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 (@seetheinvisible2020) • Instagram photos and videos
YouTube:
Sources used:
American Journal of Epidemiology
Man Dies of Coronavirus Century After Losing Twin Brother to Spanish Flu | PEOPLE.com
Sisters Die 102 Years Apart from Spanish Flu, Coronavirus | PEOPLE.com
Italian, 101, Born amid Spanish Flu Pandemic Survives Coronavirus | PEOPLE.com
How COVID-19 impacts people with disabilities (apa.org)
How Americans with disabilities can cope with the COVID-19 crisis (apa.org)
COVID-19's Impact on People with Disabilities (massgeneral.org)
COVID-19 poses unique challenges for people with disabilities | Hub (jhu.edu)
People with Disabilities | COVID-19 | CDC
How chronic illness and disability is impacted by COVID-19 | The Baylor Lariat
Coronavirus and Chronic Illness: What You Need to Know | The Mighty
https://news.un.org/en/story/2020/09/1071732
https://www.aarp.org/health/conditions-treatments/info-2020/chronic-conditions-coronavirus.html
How COVID-19 Severity is Impacted by Underlying Conditions | Time
Lessons From the Past: How the Spanish Flu Impacted the Econ
Social Media Experience - Opinion
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: Seetheinvisible2020@gmail.com
Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter
Facebook: SeetheInvisible2020 | Facebook
Website: SeetheInvisible2020.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
YouTube:
In this episode, I reviewed information from 5 Things Not to Say to Someone With an Invisible Illness - Paradigm Treatment
https://paradigmtreatment.com/someone-invisible-illness/
15 Things Not to Say to Someone with a Chronic or Invisible Illness
https://asweetlife.org/15-things-not-to-say-to-someone-with-a-chronic-illness-or-invisible-illness/
My Journey to Diagnosis Pt. 2
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 everyday.
While I always say that I want to focus on being positive, I think that it is important to address the obstacles that we faced to just put a name to the illness that was invading our life. It will show that no matter what, we are fighters, survivors and we deserve to be seen and heard.
6:42 Podcast after Introduction begins
Information on Multi-System Inflammatory Syndrome in children after Covid: Multisystem inflammatory syndrome in children (MIS-C) and COVID-19 - Symptoms and causes - Mayo Clinic
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 (@seetheinvisible2020) • Instagram photos and videos642
My Journey to Diagnosis Pt. 1
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 important to address the obstacles that we faced to just put a name to the illness that was invading our life. It will show that no matter what, we are fighters, survivors and we deserve to be seen and heard.
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 (@seetheinvisible2020) • Instagram photos and videos
Overcoming Daily Obstacles Part 2
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 Challenges! (cfsunravelled.com)
5 Ways To Cope With Anxiety That Accompanies Chronic Illness (healingwell.com)
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 (@seetheinvisible2020) • Instagram photos and videos
The "Visible" Invisible Illness
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 their illnesses treated with dignity and respect.
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 (@seetheinvisible2020) • Instagram photos and videos
Overcoming Daily Obstacles
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 Challenges! (cfsunravelled.com)
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 (@seetheinvisible2020) • Instagram photos and videos
Last Episode on Being Your Own Health Advocate
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.com – Dare to be seen!
Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
The Importance of Self Care
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 seen!
Sources
Practicing Self-Care When You Have a Chronic Illness | The Mighty
Dignity Health | Living with Chronic Illness: 5 Tips for Staying Positive and Motivated
6 Ways to Love Your Body on Bad Days with a Chronic Illness (healthline.com)
The Importance of Self-Care with Chronic Pain Conditions | Pathways
The Importance of Self-care - #BeThe1To
https://www.forbes.com/sites/payout/2017/09/19/practicing-self-care-is-important-10-easy-habits-to-get-you-started/amp/
https://www.thelawofattraction.com/self-care-tips/
The Importance of Self-Care in Maintaining Positive Mental Health - Crisis Center Of Tampa Bay
Understanding Insurance, Part 2
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.com/CInvisible2020?s=09
SeetheInvisible2020.com – Dare to be seen!
Understanding Insurance: Fun Fun Fun
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 Change.org about allowing benefits from 2020 count in the beginning months of 2021. As there are so many different parts of insurance and so many different circumstances, my idea is that each person should be given the choice on how to apply their benefits.
Petition · Alex Azar, : Extend 2020 Health Insurance deductibles into 2021 · Change.org
Sources:
HMO, PPO, EPO, POS: Which Plan Is Best? (verywellhealth.com)
Contact me:
Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos
https://twitter.com/CInvisible2020
SeetheInvisible2020 | Facebook
pinterest.com/seetheinvisible2020