Summary

In this episode, Lauren and Tori interview their moms about their experiences as parents of children with POTS. They discuss the challenges and emotions they faced when their children were first diagnosed and how POTS has affected their daily lives. They also talk about the importance of finding the right doctors and treatments, as well as the need for accommodations in school and work settings. The conversation highlights the impact of POTS on both the individuals with the condition and their families. The conversation revolves around the challenges faced by individuals with POTS (Postural Orthostatic Tachycardia Syndrome) and their parents. They discuss the difficulties in getting a proper diagnosis, the impact of POTS on daily life, and the frustration of being dismissed by doctors. They also touch on the potential genetic factors and triggers for POTS, such as concussions and COVID-19. The conversation highlights the need for more research and understanding of POTS, as well as the importance of finding knowledgeable doctors who can provide appropriate care. In this final part of the conversation, Lauren and Tori discuss the challenges of managing POTS in daily life and the difficulties of finding specialized doctors. They express their frustration with the lack of accessible treatment options and the impact of POTS on their education and career opportunities. They also discuss the importance of finding doctors who specialize in POTS and the need for more research and awareness. The conversation ends with a call for better support and resources for individuals with POTS and their families.

Takeaways

• Parents of children with POTS face unique challenges and emotions when their child is diagnosed.
• Finding the right doctors and treatments is crucial for managing POTS.
• Accommodations in school and work settings are necessary to support individuals with POTS.
• POTS not only affects the individual with the condition, but also their family members. Getting a proper diagnosis for POTS can be challenging, and individuals often face dismissal and medical gaslighting from doctors.
• POTS may have genetic factors and can be triggered by events such as concussions and COVID-19.
• There is a need for more research and understanding of POTS, as well as knowledgeable doctors who can provide appropriate care.
• Parents play a crucial role in advocating for their children with POTS and navigating the healthcare system.

Living with POTS can have a significant impact on daily life, including limitations on physical activities and the need for lifestyle adjustments.

The conversation highlights the importance of support networks and finding ways to manage symptoms and improve quality of life. Managing POTS in daily life can be challenging and limiting, affecting education and career opportunities

Finding specialized doctors who understand POTS is crucial for effective treatment

There is a need for more accessible treatment options and resources for individuals with POTS

Increased research and awareness are necessary to improve understanding and support for POTS

Chapters

00:00 Introduction and Setting the Stage

07:27 Navigating the Medical System: Finding the Right Doctors and Treatments

14:31 The Impact of POTS on Families: Supporting Loved Ones

32:08 Genetic Factors and Triggers for POTS

40:51 The Impact of POTS on Daily Life

48:19 Parental Advocacy and Navigating the Healthcare System