Primary Hyperoxaluria Type 1 (PH1)

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Primary Hyperoxaluria Type 1 (PH1)
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    Dealing with kidney stones? 😕

    Kidney stones can be incredibly painful to experience, but there are things you can do to help. For tips, information, and and resources about kidney stones, keep scrolling.

    Get Support, Give Support Here
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    Do you have a question for a kidney stone expert?

    We know how important it is to have access to advice, resources and insights from medical professionals (especially when navigating a scary or mysterious part of your health journey) — which is why we want to help you facilitate those conversations!

    In the comments below, we’ll collect questions from this group and pose them to a trained medical professional. We will try and get as many of your questions answered as possible! Once we have the information (it may take us a little while, but we’re totally on it), we will share them as a post within this group. Keep a look out! 👀

    🤔 What makes a good question you ask? One that has broad appeal. As opposed to asking about your very specific health experiences, comment with a question that may apply to a lot of people. Those are the ones more likely to get answered by an expert, and they are more likely to help a larger number of Mighties!

    🏥 P.S. If you need timely or more urgent medical advice, we recommend you make an appointment with your current provider.

    #KidneyStones #KidneyDisease #PH1 #ChronicIllness #AskMe #MightyTogether

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    New Group of the Day: PH1 Support

    Do you or your child experience kidney stones? This group may be of interest! Connect with those affected by primary hyperoxaluria type 1 (PH1), discover resources and events and find support.

    #KidneyDisease #KidneyStones

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    What’s been your experience with kidney stones?

    Kidney stones can be very uncomfortable and painful regardless of what’s causing them, but did you know that there are many causes of kidney stones? Gender, ethnicity and genetics can all affect how likely a person is to experience kidney stones. Some health conditions, such as diabetes or high blood pressure, can also increase a person's risk. Another health condition that can cause kidney stones is primary hyperoxaluria type 1, or PH1, a genetic rare disease that mainly affects the kidneys.

    If you or a loved one has ever experienced (or are currently experiencing) kidney stones, we encourage you to talk to your doctor about what might be causing them.

    P.S. For more information and resources about PH1 in particular, follow our #PH1 page (or make a post of your own!), or join our PH1 Support group to connect with others who understand.

    #KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #Kidneystone #KidneyStones #KidneyPain #KidneyProblems #kidneyawareness #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #Diabetes #HighBloodPressure #PrimaryHyperoxaluriaType1 #PH1

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    How has PH1 affected your personal relationships?

    Our Mighty members have shared how primary hyperoxaluria type 1 (PH1) and chronic pain can negatively impact their relationships with family, friends, and romantic partners. How has PH1 affected your personal relationships? Share your experiences in the comments below.

    #RareDisease #KidneyStones #KidneyDisease #PH1 #ChronicIllness

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    Who has supported you in your PH1 journey?

    Mighties, let’s give a shout-out to the amazing people in our lives who have made a difference in our PH1 journeys.

    Is there a medical professional who has helped you better manage your condition? Someone close to you who doesn’t judge and is always a thoughtful sounding board?

    Give a round of applause to them in the comments below. ⬇️

    P.S. If you’ve felt alone in your life with PH1, just know our Mighty community is here for you!

    #RareDisease #KidneyDisease #KidneyStones #PH1 #Parenting #Caregiving #ChronicIllness