RareAndMighty

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

    Here's what some patients affected by rare disease shared. Do you agree? Take our survey and let us know how covid has affected you: bit.ly/2STxzt7

    #RareDisease #RareDisorder #RareDiseaseParenting #RareAndMighty #Rarebleedingdisorder

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    Just a reminder

    Let’s build the knowledge bank that we all need, to better understand, talk about, and manage rare disease.

    Learn more: bit.ly/3w1HE4F

    #RareDisease #RareDisorder #RareBloodDisorder #RareHeartDefect #RareCongenitalDisease #RareDiseaseParenting #RareAndMighty

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    #Arachnoiditis


    #RareAndMighty
    Disability doesn’t always look sick... but rather has good days & bad days-we fight on the bad days & enjoy the rare good days with #Arachnoiditis
    We are always warriors with this condition

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    My Unicorns


    Our girls both have median arcuate ligament syndrome (MALS) and had corrective surgery a year apart. They are mighty warriors even as they’re still healing and dealing with other medical stuff. ##mightyunicornsMALS #RareAndMighty

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    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

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    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

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    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

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