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See the Invisible: Living with an Invisible or Rare Disease

See the Invisible: Living with an Invisible or Rare Disease

By Ronda F Jefferson

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!
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Health Insurance Bias - Price, Negotiations, and Lawful Bias

See the Invisible: Living with an Invisible or Rare DiseaseAug 11, 2022

00:00
34:09
The Importance of Diverse Representation in Clinical Trials
Jul 05, 202301:08:25
Cerebral Cavernous Malformations & The Breaking Barriers Initiative - Interview with Dr. Vegas Brown
Nov 21, 202257:01
Sarcoidosis: Disparities in Healthcare & the Importance of Diversity in Clinical Trials

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


Oct 31, 202201:09:22
 Moderna Sues Pfizer & BioNTech for Patent Infringement over Covid-19 Vaccine Tech

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

Moderna files patent infringement lawsuits against Pfizer and BioNTech over mRNA Covid-19 vaccines | CNN

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

Moderna posts billions in profit from COVID-19 vaccine but won’t share technology | Doctors Without Borders

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/

Aug 31, 202249:18
Health Insurance Bias - Price, Negotiations, and Lawful Bias
Aug 11, 202234:09
I'm Back! Observations About Access to Healthcare Over the Past Few Months
Jul 05, 202246:46
Update

Update

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.
Jun 21, 202203:15
Healthcare Inequities and Disparities Pt. 4

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.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/

 

https://www.kff.org/racial-equity-and-health-policy/issue-brief/health-coverage-by-race-and-ethnicity/

 

https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care

 

https://cdn.americanprogress.org/content/uploads/2020/05/06130714/HealthRace-factsheet.pdf?_ga=2.43335271.359077268.1632144410-1466257282.1632144410

 

http://www.healthcompassmilwaukee.org/tiles/index/display?alias=inequity

 

https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm

Dec 17, 202148:34
Healthcare Inequalities and Disparities
Oct 25, 202137:19
Healthcare Disparities - Baselines and Clinical Trials

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://www.aafa.org/

 

https://pharpoint.com/resources/the-history-of-clinical-trials/

 

https://acrpnet.org/2020/08/10/representation-in-clinical-trials-a-review-on-reaching-underrepresented-populations-in-research/

 

https://cdn.americanprogress.org/content/uploads/2020/05/06130714/HealthRace-factsheet.pdf?_ga=2.43335271.359077268.1632144410-1466257282.1632144410

 

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://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/

 

https://scopeblog.stanford.edu/2015/01/27/why-establishing-a-health-baseline-is-a-critical-starting-point-for-achieving-future-health-goals/

 

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

 

 

 

Oct 11, 202146:03
Healthcare Disparities - Key Points
Sep 27, 202142:06
Safe Classroom -  Part 2
Sep 14, 202129:13
Back to School - Safety Pt. 2
Sep 14, 202131:34
Safe Classrooms Part 1
Sep 07, 202116:14
Back to School - Safety Pt. 1
Sep 06, 202137:54
School Opening and Mask Mandates - an Opinion

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

Aug 30, 202132:10
Navigating the Skies with Allergies & Asthma

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/

 

https://community.kidswithfoodallergies.org/blog/peanut-nut-allergy-risk-flying-airplanes-allergic-reaction?_gl=1*1tu4xqx*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTMwMTIuMA..

https://community.kidswithfoodallergies.org/blog/food-allergic-airline-passengers-left-stranded-after-court-dismisses-case-legal-advocates-say?_gl=1*1tu4xqx*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTMwMTIuMA..

 

https://community.aafa.org/blog/aafa-addresses-amtrak-s-new-pets-on-trains-policy?_gl=1*uxxl86*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTI5MDQuMA..

 

https://community.kidswithfoodallergies.org/blog/traveling-tips-food-allergies-children?_gl=1*uxxl86*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTI5MDQuMA..

 

https://community.aafa.org/blog/family-removed-from-plane-after-boy-s-allergic-reaction-to-dog?_gl=1*uxxl86*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTI5MDQuMA..

 

Aug 24, 202141:35
Asthma, Allergies and Travel
Aug 16, 202137:27
Asthma, Allergies and the ADA

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.gov homepage

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

Aug 03, 202128:24
Living with Asthma Pt. 4 - Asthma and Pregnancy

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

Jul 26, 202135:06
Exploring Asthma Pt. 3
Jul 19, 202132:23
Exploring Asthma Pt. 2

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.mayoclinic.org/diseases-conditions/asthma/expert-answers/vocal-cord-dysfunction/faq-20058019

 

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

 

Jul 12, 202139:41
Exploring Asthma Pt. 1
Jul 05, 202141:44
Life with Allergies Pt. 4

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/adults-with-food-allergies/food-allergies-in-the-workplace/

https://www.foodallergyawareness.org/education/adults-with-food-allergies/events-within-the-workplace/

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

Jun 21, 202143:56
Life with Allergies Pt. 3
Jun 14, 202143:40
Life With Allergies Part 2
Jun 07, 202143:44
Life with Allergies Part 1
Jun 01, 202121:06
Caring for the Caregiver Pt.2

Caring for the Caregiver Pt.2

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.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
May 24, 202148:37
Caring for the Caregiver

Caring for the Caregiver

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.
May 17, 202133:07
When Your Doctor Won't Listen
May 10, 202145:53
Autoimmune vs. Autoinflammatory
May 04, 202146:44
Make the Visible Seen
Apr 26, 202141:39
Research and Orphan Diseases
Apr 19, 202143:16
Health Tech Pros and Cons Part. 2
Apr 12, 202148:30
Health Tech Pros and Cons Part 1
Apr 06, 202140:45
Social Media and Mental Health
Mar 30, 202159:21
1918-1920 Pandemic vs. 2020-? Part 4
Mar 23, 202137:10
1918-1920 Pandemic vs. 2020-? Part 3
Mar 16, 202137:48
1918-1920 Pandemic vs. 2020-? Part 2
Mar 09, 202139:58
1918-20 and 2020-? Pandemics

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:

SeeTheInvisible - YouTube

Sources used:

 American Journal of Epidemiology 

Spanish flu - Wikipedia

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

Mar 02, 202130:00
Social Media Experience - Opinion
Feb 23, 202139:11
My Journey to Diagnosis Pt. 2
Feb 15, 202142:54
My Journey to Diagnosis Pt. 1
Feb 08, 202130:47
Overcoming Daily Obstacles Part 2
Feb 02, 202133:09
The "Visible" Invisible Illness
Jan 29, 202125:07
Overcoming Daily Obstacles
Jan 27, 202131:55
Last Episode on Being Your Own Health Advocate
Jan 18, 202132:04
The Importance of Self Care
Jan 07, 202120:54
Understanding Insurance, Part 2
Dec 22, 202033:50
Understanding Insurance: Fun Fun Fun
Dec 07, 202030:37