Achondroplasia

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Achondroplasia
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    I'm new here!

    Hi, my name is Rarafiqry. I'm looking for
    more information about achondroplasia #MightyTogether

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    Have you found any books, shows, or movies that portray achondroplasia well?

    Unfortunately, depictions of achondroplasia in the media are not always accurate – we’ve heard from our community how frustrating it is to see media perpetuating harmful stereotypes, or how isolating it can be to not feel represented at all.

    Have you found any accurate or validating portrayals of achondroplasia (whether in books, shows, movies, etc.)? Share your thoughts in the comments below.

    #RareDisease #Dwarfism #SkeletalDysplasia #Achondroplasia #ChronicPain

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    True or False: You find it difficult to discuss your treatment plan with your doctor.

    Making the decision to change up your treatment plan should be a productive dialogue between a patient and their care team. But we know from experience that those conversations can be... tricky.

    What are your biggest challenges when discussing your treatment plan with your doctor? Find it easy? If so, share your tips below!

    #RareDisease #Dwarfism #Achondroplasia #SkeletalDysplasia #Parenting #Caregiving

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    What’s your go-to technique for relieving stress with achondroplasia?

    Balancing self-care and daily responsibilities while managing achondroplasia can be challenging, especially when you're experiencing increased levels of stress.

    How do you relieve stress as it relates to achondroplasia? Share and help one another in the comments below (who knows, you might just pick up a new technique!).

    #RareDisease #Dwarfism #SkeletalDysplasia #Achondroplasia #ChronicPain #Parenting #Caregiving #Stress

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    What would improve your relationship with your doctor or therapist?

    Your relationship with a doctor or therapist is an important one, but it can be really frustrating when you feel like you're not being listened to or your needs aren’t being met.

    Is there anything your doctor or health care team could do to improve your experience or relationship?

    Let us know in the comments below. ⬇️

    #RareDisease #Achondroplasia #Dwarfism #SkeletalDysplasia #Parenting #Caregiving #ChronicPain

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    What’s the best advice you’ve received about living with achondroplasia?

    We’d love to hear what you've learned or what has helped you manage, treat, or accept your achondroplasia diagnosis.

    Share your hacks, tips, or advice for living with achondroplasia in the comments below. ⬇️

    #RareDisease #Dwarfism #SkeletalDysplasia #Achondroplasia #ChronicPain #Parenting #Caregiving

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    Poll

    Choose one
    6 days left
    Never
    Hardly ever
    Some of the time
    Often
    Always
    2 reactions
    Poll

    Choose one
    7 days left
    I’ve been formally diagnosed with achondroplasia
    I currently care for someone with achondroplasia
    I cared for someone with achondroplasia who no longer needs
    I am a medical professional who specializes in ACH
    I am a patient advocate or educator for achondroplasia
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    How do you practice self-care?

    Living with achondroplasia can be challenging, but developing self-care strategies and being intentional with how you cope can make a difference (even a small one) in your day-to-day life.

    How do you practice self-care? Share what has helped you in the comments below. ⬇️

    #RareDisease #Achondroplasia #SkeletalDysplasia #Dwarfism #ChronicPain #Parenting #Caregiving

    1 reaction