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I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?

  1. The fatigue I live with and the days I am not able to function well. I never know from day to day how I will feel.

    1. Hi,
      Thank you for sharing about this.
      I also wish my friends and family could understand about unpredictable fatigue...It's a symptom of so many rare diseases... and one of a number of invisible symptoms.
      Personally, I realize now that after having not really getting support around this in the marriage I am in the midst of divorce with, I have some shame built up... reading your share helped me realize that I am probably better off moving forward in both fully accepting this reality and finding ways to communicate about it without any shame.
      Hope you're having a good energy level day,
      Gina Miller
      Team Leader

    2. , I think when people say fatigue, most people think - Well, I'm tired, too. They don't really understand the all-consuming fatigue and interference with activities of daily living. - Warmly, Donna (Team member)

  2. How easy it is to get misdiagnosed and mistreated


    1. It really is far too common to receive a misdiagnosis and then potentially inappropriate treatments when one has a rare disease. We often don't luck out along our journeys and find primary care providers who can recognize our diseases...

      May I ask what rare disease or diseases you are diagnosed with? I assume from your share that you journey to diagnosis was not easy...would you like to share more about it?

      In my case, it took getting diagnosed with one rare disease (MAC Lung Disease) to eventually learn that another rare disease, Cystic Fibrosis, had been plaguing me my entire life. It also took a lot of courage and effort and money on my part to get myself to experts in MAC (in another state, requiring a 10 day stay at an AirBnB to get all of the testing done) to be able to finally be properly diagnosed with CF.

      Gina Miller,
      Team Member

  3. I too am literally exhausted and am rarely in any mood to live up to others expectations. I have became a withdrawn shell of my former self and find comfort in my solitude. I was husband,father, grandfather former R.N. that worked in critical care for many years and all that seems to have been a lifetime ago . We all have a story and sometimes a safe place to vent. Thank you for that opportunity. Hudson Carlton

    1. - We're glad you're here, Hudson. - Warmly, Donna (team member)

  4. Living with vasculitis is emotionally draining.

    1. Hi. I just took a moment to read up on vasculitis. I can understand how the ongoing inflammatory situation and accompanying unpredictability of flares with this chronic rare disease causes emotional distress, especially with navigating social events. I hope you are finding some new ideas in others; comments here to help along these lines.

      PS: I noticed you aren't yet using a chosen name here... if you'd like to change it, you can do so by clicking the icon in upper right corner of page...& choose "Account Settings" to change your profile.

      Smiles your way,
      Gina Miller, Team Member

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