Wow! Thank you so much for bravely sharing, & for the shout out! 😭 Be kind to you, as it’s so triggering to relive, but also so healing. When you talked about suddenly losing the ability to communicate in JFK…. I lost it! The irony!?!? This is such important work! I love you guys so much and I’m so sorry we are all a part of this club we never asked to be in, but I’m so grateful to be in your company! It truly is a sibling-ship for life. Community is everything! Your knowledge is astounding & I’m just in awe of how you’ve handled this! You’re amazing & this episode will help save SO many lives! Bravo you two. Thank you so much for sharing. Please keep going! Always here. 🫶 XO
Thanks for sharing Mauve! It's been 10 years since I was diagnosed, and I remember so vividly how alone I felt with this new condition. This podcast will have such a profound impact on people looking for answers or even to just to feel seen xx
😭 all of this is so relatable! Im so scared that they'll just keep dismissing everything and I'll go into shock again 😭 My cardiologist just put me on fludrocortisone because my blood pressure was dropping as low as 60/30 and my sodium is always low even though I consume a ridiculous amount of salt. I live in Canada and have a tan that hasn't faded in 4 years. My son is always comparing our arms and saying that we don't even look related anymore because he is white as snow and I look like I've been living in Hawaii! Thank you for sharing your story!! It's so important that we spread awareness of this! And hopefully more of the medical community will clue in because it's really scary knowing more about an illness than literal doctors! 😢
Thank you for sharing your story Mauve 💙🦋
Thank you for making this it means the world to us 🦋
Wow! Thank you so much for bravely sharing, & for the shout out! 😭 Be kind to you, as it’s so triggering to relive, but also so healing. When you talked about suddenly losing the ability to communicate in JFK…. I lost it! The irony!?!? This is such important work! I love you guys so much and I’m so sorry we are all a part of this club we never asked to be in, but I’m so grateful to be in your company! It truly is a sibling-ship for life. Community is everything! Your knowledge is astounding & I’m just in awe of how you’ve handled this! You’re amazing & this episode will help save SO many lives! Bravo you two. Thank you so much for sharing. Please keep going! Always here. 🫶 XO
Thanks for sharing Mauve! It's been 10 years since I was diagnosed, and I remember so vividly how alone I felt with this new condition. This podcast will have such a profound impact on people looking for answers or even to just to feel seen xx
I’m newly diagnosed and this was much needed in so many ways, but especially emotionally. Thank you!
😭 all of this is so relatable! Im so scared that they'll just keep dismissing everything and I'll go into shock again 😭
My cardiologist just put me on fludrocortisone because my blood pressure was dropping as low as 60/30 and my sodium is always low even though I consume a ridiculous amount of salt. I live in Canada and have a tan that hasn't faded in 4 years. My son is always comparing our arms and saying that we don't even look related anymore because he is white as snow and I look like I've been living in Hawaii!
Thank you for sharing your story!! It's so important that we spread awareness of this! And hopefully more of the medical community will clue in because it's really scary knowing more about an illness than literal doctors! 😢