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    How do you know if a doctor is a good fit?

    We know good doctors when we see them. Maybe it’s their communication style or something they did that went above and beyond. Perhaps it’s a genuine bedside manner or a doctor who always returns your calls the same day you make them.

    In your experiences, how do you know if a doctor is a good fit for you?

    #RareDisease #ChronicIllness #KidneyDisease #KidneyStones #PH1

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    State of Unbelief… #FND ? #nowayihavethat !

    Hi! 😃💜💜
    I’m new to the group!

    Hope all of you are having a good day today! 😊💟

    As the title states… I did NOT believe it when I received the #FNDdiagnosis !

    I’m still having trouble grasping my neuros assessment of all my conditions & symptoms!….

    Since I’ve been dealing with ALL my NEURO health issues since 2013 & she just met me last year!

    — Can’t stand narrow minded tunnel vision non proactive & non helpful doctors! — #timetochangeneuros

    Anybody else try to “forget” all their diagnosis ON THE DAILY??!!
    — because it’s just too overwhelming & creates anxiety?

    I try most days to push myself beyond the EXTREME pain & numerous symptoms & focus on ANYTHING ELSE to take my mind off my daily struggles & I’m sure you ALL do some of the same things!

    — That’s it! lol 😜😎🥰

    I hope each of you find JOY in your lives DAILY!😁😘

    #HEDS #POTS #IIH #RheumatoidArthritis #DevicsDisease #wheelchairbound4x #OpticNeuritis #DoubleVision
    #gastreoparesisSUCKS !! #PituitaryTumor #Diabetes #HBP #Asthma #COPD
    #Anxiety #Depression #NeurogenicBladder #chronicUTIS #KidneyStones #toomanypillstotake !
    #toomanydiagnosis !


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    What was your rare disease diagnosis journey like?

    A rare disease can significantly impact and disrupt your daily life, but receiving a diagnosis can be validating and can ultimately alleviate your symptoms.

    If you have received a diagnosis, what was that experience like? Do you have any advice for someone who has not yet received a diagnosis? For those still awaiting a diagnosis, what has your journey been like so far? Share your thoughts in the comments below. ⬇️

    #RareDisease #ChronicIllness #KidneyDisease #KidneyStones #PH1

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    Which area of your life does your rare disease impact the most?

    From performance at work and school to spending quality time with family and friends, we know a rare disease diagnosis can affect life in many different ways (both good and bad).

    What area of your life has been most negatively impacted by your rare disease? What area has been most positively impacted? Share with us in the comments below. ⬇️

    #RareDisease #ChronicIllness #KidneyStones #KidneyDisease #PH1

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    Do you feel like you’re still searching for the "right" treatment for your rare disease?

    Mighty fam, we’ve heard from so many of you that finding a treatment plan is one of the most difficult day-to-day challenges of managing your condition. There can be many reasons why a treatment or medication isn’t the right fit for you – maybe it comes with intolerable side effects, or you start experiencing new symptoms, or perhaps it’s a daily pill and you’d prefer a monthly injection.

    If you are taking medication to treat your rare disease, do you feel like you’re still searching for the "right" one?

    #RareDisease #ChronicIllness #KidneyStones #KidneyDisease #PH1

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    30% ●
    🔋 energy
    8% ●
    ⏰ time
    17% ●
    💖 support
    21% ●
    💃 fun
    13% ●
    📱 connection
    12% ●
    😴 rest
    128 votes
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    How did you feel when you received your rare disease diagnosis?

    A rare disease diagnosis can be overwhelming if you are not expecting it. Even if you have been awaiting your diagnosis for a while, it can take time to process. Sometimes this includes grieving your “old” identity before you were diagnosed.

    If you have been diagnosed with a rare disease, how did you feel? Did you have to grieve or mourn the loss of your old identity? Or did it feel like a huge relief to place a name to what you’ve been going through?

    Share your experience in the comments below. ⬇️

    #RareDisease #ChronicIllness #KidneyDisease #KidneyStones #KidneyHealth #PH1

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    True or False: I feel like my doctor listens to me and values my opinion.

    Mighty fam, we’ve heard from so many of you about the relationship you have with your doctor and how important it is. For some of you, your doctor is the only one who “gets” it. For others, communicating with your doctor about your rare disease is a frustrating experience.

    Share whether the above statement feels true or false to you in the comments below. (And if you feel up to it, tell us why!)

    #RareDisease #ChronicIllness #KidneyDisease #KidneyStones #PH1

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    What’s in your rare disease “toolkit”?

    If you live with a rare disease, you may have found that having a “toolkit” (real or figurative) helps you better manage your symptoms, especially on days when it’s difficult to remember what might make you feel better.

    Whether it’s a list of coping strategies you have in your head, or a box of relaxing, distracting activities, a rare disease toolkit can come in handy. What do you have in yours? Share in the comments below.

    #RareDisease #ChronicIllness #KidneyStones #KidneyDisease #KidneyHealth #kidneyawareness #PH1

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    What helps you get better sleep?

    We know that a rare disease can impact a person’s sleep schedule, from insomnia, to fatigue, to struggling to get out of bed.

    If your rare disease has affected your sleep in some way, what helps you? What advice do you have for someone struggling to catch some quality rest?

    Share your experience and suggestions in the comments below.

    #RareDisease #ChronicIllness #KidneyDisease #KidneyHealth #KidneyStones #PH1