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See the Invisible: Living with an Invisible or Rare Disease
By Ronda F JeffersonHealth & Fitness
See the Invisible: Living with an Invisible or Rare Disease episodes
- Caring for the Caregiver Pt.2Also, 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: [email protected]Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Website: SeetheInvisible2020.com – Dare to be seen!Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videosYouTube: SeeTheInvisible - YouTubeSources:Caregiver stress: Tips for taking care of yourself - Mayo ClinicSupporting 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 Partners49 min
- Caring for the CaregiverToday 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.34 min
- 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: [email protected]
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)
46 min - 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: [email protected]
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:
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)
DMARDs | Arthritis Foundation
47 min - 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: [email protected]
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
42 min - 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
New Study Investigates the Number of Available Orphan Products, Generics and Biosimilars - NORD (National Organization for Rare Disorders) (rarediseases.org)
Definition of Orphan disease (medicinenet.com)
Orphan Drug Act of 1983 - Wikipedia
44 min - 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: [email protected]
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.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://healthtechmagazine.net/article/2020/04/weighing-pros-and-cons-wearable-health-technology-perfcon
https://www.chartlogic.com/blog/how-patients-view-ehrs-the-pros-and-the-cons/
https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/personal-health-record/art-20047273
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/
https://hackernoon.com/chronic-condition-health-apps-how-to-manage-chronic-illnesses-and-gain-profit-640291c4d1a9
49 min - 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: [email protected]
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.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://healthtechmagazine.net/article/2020/04/weighing-pros-and-cons-wearable-health-technology-perfcon
https://www.chartlogic.com/blog/how-patients-view-ehrs-the-pros-and-the-cons/
https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/personal-health-record/art-20047273
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/
https://hackernoon.com/chronic-condition-health-apps-how-to-manage-chronic-illnesses-and-gain-profit-640291c4d1a9
41 min - 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: [email protected]
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:
Psychosocial Effects of the COVID-19 Pandemic: Large-scale Quasi-Experimental Study on Social Media - PubMed (nih.gov)
Too Much Time Spent On Social Media Is Taking Mental Health Toll On Users During Coronavirus Pandemic (forbes.com)
Navigating the Coronavirus and Social Media | Psychology Today
The role of social media in COVID-19 | Exploring the effects of social media on mental health during COVID (cuny.edu)
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
NIMH » Help for Mental Illnesses (nih.gov)
1 hr - 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.
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: [email protected]
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 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
38 min
About See the Invisible: Living with an Invisible or Rare Disease
From the publisher's feed
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 - This podcast is not meant to take the place of any medical or insurance advice. Support this podcast: SeetheInvisible2020.com – Dare to be seen!