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المحتوى المقدم من Jennifer Fugo, CNS, Clinical Nutritionist, Jennifer Fugo, CNS, and Clinical Nutritionist. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Jennifer Fugo, CNS, Clinical Nutritionist, Jennifer Fugo, CNS, and Clinical Nutritionist أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.
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372: What Is Topical Steroid Withdrawal (And How To Advocate To Get TSW Recognized) w/ Briana Banos

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Manage episode 462654912 series 2510351
المحتوى المقدم من Jennifer Fugo, CNS, Clinical Nutritionist, Jennifer Fugo, CNS, and Clinical Nutritionist. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Jennifer Fugo, CNS, Clinical Nutritionist, Jennifer Fugo, CNS, and Clinical Nutritionist أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.

If you’re not sure what is Topical Steroid Withdrawal… Imagine living through a condition so painful and misunderstood that it disrupts every aspect of your life, yet the medical community largely dismisses it.
That’s the reality of topical steroid withdrawal (TSW) that also creates life-altering health challenges making it extremely difficult to function, sleep or work; show up as a present partner or parent; or live a fun care-free life for kids with TSW.
And it presents significant challenges for parents caring for children with TSW who may end up being threatened with having the authorities (or child protective services) called on them for refusing more steroids.
As of today, Topical Steroid Withdrawal Syndrome still isn’t accepted by the medical community, often labeling those worried about TSW as “steroid-phobic.” Platforms like TikTok have given TSW warriors a voice thanks to millions of views for these videos, helping to raise awareness globally and sparking legislative efforts which document what causes TSW..
In this eye-opening episode, filmmaker and advocate Briana Banos returns to share her journey and the powerful impact of her documentaries, Preventable, and the newly released follow-up, Still Preventable.
Briana Banos is the creator of the first ever Topical Steroid Withdrawal documentary, Preventable, and the newly released TSW documentary, Still Preventable, which expands on her previous film. From anecdotal stories and doctor interviews, to the history of topical steroids and avenues of reform, Briana continues to shed light on this underrepresented subject.
Her battle with TSW began after years of using topical steroids prescribed for eczema—a common treatment that left her dealing with a condition far worse than the original problem. Her first documentary, Preventable, brought awareness to a scattered and overlooked community. But as her own TSW journey stretched into its seventh year, Briana felt compelled to dig deeper, creating Still Preventable to highlight the systemic issues keeping this condition in the shadows and to empower others to use their voices.
If you’re ready to learn what is topical steroid withdrawal (TSW) and discover ways to make a difference, this is an episode you don’t want to miss. Let’s dive in!

In This Episode:

  • The inspiration behind Still Preventable and why Briana felt compelled to create it
  • What is topical steroid withdrawal and how it’s misunderstood in medical settings
  • Shocking historical facts about the FDA’s role in approving topical steroids
  • Why TSW is being updated to include the term “syndrome”
  • What does being a “long hauler” mean in terms of TSW
  • Advocacy wins: how states like Florida and Maine are acknowledging TSW
  • Why telling YOUR TSW story helps shift narratives and drives change
  • How to get your state to recognize what is topical steroid withdrawal (it’s easier than you think)
  • Long-term effects of untreated TSW
  • Tips to support individuals and families affected by TSW

Quotes
“We need to stop feeling helpless—if we use our voices together, we can push the needle forward and create change, even if it takes time.” – Briana Banos
“The FDA told us, ‘This is not our problem—you need to bring it up with your doctor,' but patients shouldn’t have to educate their doctors on adverse effects.” – Briana Banos
Links
Find Briana Banos online | Instagram | YouTube
ITSAN Advocacy Page: https://itsan.org/advocacy/

  continue reading

381 حلقات

Artwork
iconمشاركة
 
Manage episode 462654912 series 2510351
المحتوى المقدم من Jennifer Fugo, CNS, Clinical Nutritionist, Jennifer Fugo, CNS, and Clinical Nutritionist. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Jennifer Fugo, CNS, Clinical Nutritionist, Jennifer Fugo, CNS, and Clinical Nutritionist أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.

If you’re not sure what is Topical Steroid Withdrawal… Imagine living through a condition so painful and misunderstood that it disrupts every aspect of your life, yet the medical community largely dismisses it.
That’s the reality of topical steroid withdrawal (TSW) that also creates life-altering health challenges making it extremely difficult to function, sleep or work; show up as a present partner or parent; or live a fun care-free life for kids with TSW.
And it presents significant challenges for parents caring for children with TSW who may end up being threatened with having the authorities (or child protective services) called on them for refusing more steroids.
As of today, Topical Steroid Withdrawal Syndrome still isn’t accepted by the medical community, often labeling those worried about TSW as “steroid-phobic.” Platforms like TikTok have given TSW warriors a voice thanks to millions of views for these videos, helping to raise awareness globally and sparking legislative efforts which document what causes TSW..
In this eye-opening episode, filmmaker and advocate Briana Banos returns to share her journey and the powerful impact of her documentaries, Preventable, and the newly released follow-up, Still Preventable.
Briana Banos is the creator of the first ever Topical Steroid Withdrawal documentary, Preventable, and the newly released TSW documentary, Still Preventable, which expands on her previous film. From anecdotal stories and doctor interviews, to the history of topical steroids and avenues of reform, Briana continues to shed light on this underrepresented subject.
Her battle with TSW began after years of using topical steroids prescribed for eczema—a common treatment that left her dealing with a condition far worse than the original problem. Her first documentary, Preventable, brought awareness to a scattered and overlooked community. But as her own TSW journey stretched into its seventh year, Briana felt compelled to dig deeper, creating Still Preventable to highlight the systemic issues keeping this condition in the shadows and to empower others to use their voices.
If you’re ready to learn what is topical steroid withdrawal (TSW) and discover ways to make a difference, this is an episode you don’t want to miss. Let’s dive in!

In This Episode:

  • The inspiration behind Still Preventable and why Briana felt compelled to create it
  • What is topical steroid withdrawal and how it’s misunderstood in medical settings
  • Shocking historical facts about the FDA’s role in approving topical steroids
  • Why TSW is being updated to include the term “syndrome”
  • What does being a “long hauler” mean in terms of TSW
  • Advocacy wins: how states like Florida and Maine are acknowledging TSW
  • Why telling YOUR TSW story helps shift narratives and drives change
  • How to get your state to recognize what is topical steroid withdrawal (it’s easier than you think)
  • Long-term effects of untreated TSW
  • Tips to support individuals and families affected by TSW

Quotes
“We need to stop feeling helpless—if we use our voices together, we can push the needle forward and create change, even if it takes time.” – Briana Banos
“The FDA told us, ‘This is not our problem—you need to bring it up with your doctor,' but patients shouldn’t have to educate their doctors on adverse effects.” – Briana Banos
Links
Find Briana Banos online | Instagram | YouTube
ITSAN Advocacy Page: https://itsan.org/advocacy/

  continue reading

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