The Desperate For a Diagnosis Podcast features Melissa Schroeder discussing her journey with Ehlers Danlos (EDS) and POTS (Postural Orthostatic Tachycardia Syndrome). She talks about her struggles with joint dislocations and the difficulty of getting a diagnosis due to the high cost of genetic testing. Melissa shares her personal experience of struggling to find a diagnosis for their medical condition since childhood, even after seeing numerous doctors and specialists, including psychiatrists and therapists. She emphasizes the importance of persistence in seeking a diagnosis and encourages others to do her own research and advocate for themselves. Additionally, she discusses the value of having supportive friends and even a trained dog to help her through her medical journey.

Chapters:

00:00:00 Hope And Encouragement In Life's Surprising Twists And Turns

00:01:58 A Life With Animals: A Passion for Volunteering and A Special Pooch

00:03:47 Unexpected Connection Leads to New Dog for Volunteer at Animal Sanctuary

00:06:40 Childhood Struggles With Unidentified Pains and Breaks

00:10:21 Struggle With Diagnosis And Treatment For Rare Medical Condition

00:13:35 Genetic Testing For Medical Diagnosis Is Costly and Requires Further Exploration

00:24:35 Patient Shares Frustrating Experience with Doctor's Misdiagnosis and Lack Of Attention

00:31:56 Patient Shares Advice for Coping with Illness and Finding Support Groups

00:33:23 Support Group for Personal Well-being Beyond Diagnosis

00:37:42 A Reluctance To Deal With Complex Issues In Healthcare

Key Takeaways:

1. Melissa discusses her experience with doctors and specialists, often being misdiagnosed or not taken seriously.

2. She talks about the relief of finally receiving a diagnosis of Ehlers-Danlos Syndrome (EDS), but also the fear of how it will impact her future.

3. Melissa shares her daily routines and exercises to manage her symptoms, including walking and yoga.

4. She discusses the potential genetic link to EDS in her family and the challenges of pursuing genetic testing.

5. Melissa introduces her service dog, Ivory, who helps her with tasks such as retrieving medication and assisting during allergic reactions.

6. She also mentions her online community for individuals with EDS and offers advice for seeking a diagnosis.

Resources:

Melissa mentioned a wonderful community that helped her connect with people with her condition. Learn more about ⁠Insipire.com.⁠

• Searching for a diagnosis – or being diagnosed with a health condition – can be overwhelming.
• Inspire is the largest online community for health. It’s a safe, anonymous space where you can find information and support for over 3,000 conditions.
• On Inspire, patients and caregivers open up about their conditions, ask questions and share support for their health challenges.
• Find your community of support at Inspire.com.

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

YouTube: https://www.youtube.com/@desperateforadiagnosis

Facebook: https://www.facebook.com/DesperateForADiagnosisPodcast

LinkedIn: https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/