Achondroplasia

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Achondroplasia
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    How many medical appointments do you average in a month?

    If you ever feel like you spend significantly more time at the doctor’s than any other person in your life, you have find your people on The Mighty. We can all relate!

    In an average month, how many appointments do you or your loved one have? These visits could look like treatments, check-ups, therapy, hospital stays or emergency visits.

    🏥 None

    🏥 1-3

    🏥 4-6

    🏥 7-9

    🏥 10+

    Comment with your or your loved one's number/range below.

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

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    Describe your health today in 3 words.

    What trio of words would you use to describe how you’re feeling today? To come up with them, consider how your body and mind feel in the moment.

    Are you struggling? Fuzzy? In pain? Numb? Hurting? Content? Stable?

    If you’re having an especially rough day, sending you lots of Mighty love. 🧡

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

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    What was the highlight of your week?

    We made it through another week, hooray! Reflecting on the last five days, what jumps out at you? What was the most special / super moment from your week?

    Share your super moment from the last five days below! 👇

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

    16 reactions 7 comments
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    What would you tell someone whose loved one is newly diagnosed with achondroplasia?

    Approximately 80% of people diagnosed with achondroplasia (ACH) are born to parents without the condition, which means the majority of caregivers may learn about ACH for the first time at the time of their loved one's diagnosis and may be overwhelmed trying to find reliable, up to date information.

    What would you tell someone whose loved one was just diagnosed with achondroplasia? Is there one piece of advice, tip, or trick you would share with other caregivers to make their and their loved one’s health journey easier? Share in the comments below. ⬇️

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

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    Come check out Let's Talk Achondroplasia!

    Hi, friends!

    Have you seen The Mighty’s newest group?

    We recently launched Let’s Talk Achondroplasia, a public group for peer support and connection around achondroplasia (ACH), the most common type of dwarfism. Whether you have been diagnosed with ACH, care for someone else who’s been diagnosed, or you are an ACH patient advocate or educator, our community is here to support you!

    Join us here: Let’s Talk Achondroplasia

    #LetsTalkAchondroplasia #LivingWithRareDisease #RareDisease #Achondroplasia #MightyTogether

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    What does self care look like to you?

    It can be a challenge (and even feel impossible at times!) balancing taking care of your or your loved one’s health and your other priorities (such as work, school, and household chores).

    How do you ensure you are taking care of yourself, especially your mental and emotional health? Whether relieving stress through meditation or yoga, distracting yourself with hobbies or activities you enjoy, spending quality time with loved ones, or connecting with a mental health professional, share your self-care routine below. ⬇️

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

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    What do you wish others knew about your rare disease?

    One of the everyday challenges of living with a rare disease such as achondroplasia is explaining the rare disease to others (whether your doctor, family, friends, or strangers).

    What is something you wish others knew about achondroplasia? What is something you are just tired of explaining? Share in the comments below. ⬇️

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

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    How do you relieve stress?

    Balancing self-care and daily responsibilities while living with achondroplasia can be challenging, especially when you're experiencing stress. How do you relieve stress as it relates to your condition? Let's share and help one another in the comments below. 💌

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

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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 health, 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 #Parenting #Caregiving #Dwarfism #SkeletalDysplasia #Achondroplasia #ChronicPain #SleepApnea

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    Three Mighty recommendations to start off your 2023

    The start of a new year can be a stressful time for all, but especially those living with a rare disease. We’ve rounded up 3 pieces to kick off 2023, which you can check out here:

    📱 11 Tips for Making Medical and Insurance Calls Less Frustrating: themighty.com/topic/complex-regional-pain-syndrome/tips-call...

    🩺 To the Parents Whose Children Have Been Diagnosed With a Rare Disease: themighty.com/topic/rare-disease/new-parent-child-rare-disease

    ✔️ 5 Reasons You Need a Rare Disease Community: themighty.com/topic/rare-disease/finding-rare-disease-community-helps

    #RareDisease #Parenting #Caregiving #Achondroplasia #Dwarfism #SleepApnea #ChronicPain

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