RareAndMighty

Join the Conversation on
468 people
0 stories
70 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Community Voices

    Covid-19 & Rare Disease Survey – how are you feeling?

    <p><a href="https://themighty.com/topic/corona-virus-covid-19/?label=Covid-19" class="tm-embed-link  tm-autolink health-map" data-id="5e678dcff3e6f44cb2d93fd4" data-name="Covid-19" title="Covid-19" target="_blank">Covid-19</a> & <a href="https://themighty.com/topic/rare-disease/?label=Rare Disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="Rare Disease" title="Rare Disease" target="_blank">Rare Disease</a> Survey – how are you feeling?</p>
    3 people are talking about this
    Community Voices

    Just a reminder

    <p>Just a reminder</p>
    3 people are talking about this
    Community Voices
    Community Voices
    Community Voices

    Conversion disorder as ruined my life

    1 person is talking about this
    Community Voices

    My Unicorns

    <p>My Unicorns</p>
    Community Voices
    Community Voices

    Rare and Mighty is what I strive for. #

    I will be bionic after I get my other knee replaced and my other shoulder replaced. I will tend to my garden and life will be better.
    My true super power is educating people about my illnesses. So many have responded with "My cousin/friend/etc had Lupus, I thought she just had to stay out of the sun." It's so great to see the light bulb go off above their head as they realize what life is like for someone they care for. It's a flash of empathy that I hope stays with them.
    #RareAndMighty #HEDS #Lupus #tietze Syndrome #stage 3 Kidney Disease #Shoulder Replacement Surgeries #knee Replacement Surgeries #svt #a -fib #chronic Pain

    Community Voices

    Just diagnosed

    I was recently diagnosed with Addison's Disease (Adrenal Insufficiency) - secondary adrenal Insufficiency. My doctor explained that it is a life threatening condition and am on medication for life. At the moment I'm scheduled for an MRI of my brain, specifically the pituitary gland because bloodwork showed that abnormalities are coming from my brain. I'm overwhelmed and anxious by all of this!! Is anyone else going through this?
    #RareAndMighty

    7 people are talking about this
    Community Voices

    Wish I had a diagnosis

    For years now I have been struggling with physical decline but as yet I have no diagnosis. I have seen more neurologist than I knew existed in this state. Each time the physician says "yep there is something wrong but darned if I know what it is". The provisional diagnosis is muscular dystrophy but the biopsy was negative.  So really not a good diagnosis. The challenge I face is what do you say when people ask why you are in a wheelchair?  searching 
    #RareAndMighty

    4 people are talking about this