Living with PH1 can be really challenging, and oftentimes looks different for everyone. What do you feel is the hardest part about living with PH1? What do you wish others better understood?
#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1
Each of our health journeys are multifaceted, complex, and unique — but that doesn’t mean we’re alone in what we go through. Those shared experiences are what make us Mighty! 💪
Today, share a part of your PH1 journey that has stuck with you and made a lasting impact — no matter if it’s a positive or negative mark.
#KidneyDisease #KidneyTransplant #PH1 #PrimaryHyperoxaluriaType1 #ChronicIllness #RareDisease #Caregiving #KidneyStones #LiverDisease
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From employment to body image, dating to maintaining personal relationships, we know PH1 symptoms can affect life in many different ways (both good and bad).
Whether it’s stigma, lack of public understanding, or the impact your condition has on your confidence and self-image, it can be challenging to navigate relationships of all kinds.
How has PH1 affected your ability to date and explore romantic relationships, if those are of interest to you? Let’s share and help one another in the comments below. 💌
#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1
There are many lab tests your doctor can perform to diagnose and track the progression of your primary hyperoxaluria type 1 (PH1). But sometimes it can be challenging (or feel impossible!) to understand lab test results even when your doctor walks through them with you, leaving you feeling confused or frustrated.
What do you find most challenging? Share your experiences or tips with us in the comments below. ⬇️
#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1
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If your doctor prescribes a new-to-you primary hyperoxaluria type 1 (PH1) treatment, what’s important for you to know before you start taking it?
Maybe you receive the majority of your medical information from your doctor, and defer to their recommendations about possible treatment options. Maybe you would prefer to talk to your loved ones about your options, or perhaps you look to the experiences of other patients who have already tried the medication you are considering.
Share what’s important to you in the comments below. There’s no wrong answer!
#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1
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Living with a kidney disease like primary hyperoxaluria type 1 (PH1) means that taking care of your health can often feel like a full-time job. Maybe you are making phone calls to your medical team, paying bills, requesting medical records, scheduling an appointment, or picking up medication at the pharmacy.
What do you need to get done this week?
#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1
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PH1 treatment types and experiences can vary from person to person. What treatment experiences did you have that did not meet your expectations? In what ways, if any, have you been pleasantly surprised? Share in the comments below. ⬇️
#KidneyDisease #KidneyStones #KidneyTransplant #PH1 #RareDisease
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Managing a rare disease such as primary hyperoxaluria type 1 (PH1) can be incredibly challenging, causing you to feel tired or depleted. What do you wish you had more of this week? Take what you need, Mighty fam!
🔋 energy
⏰ time
💖 support
💃 fun
📱connection
😴 rest
📣 encouragement
☀️ good weather
✌️peace
🧘 pain-free moments
⚖️ stability
🙌 motivation
📚 distraction
💪 strength
🤞patience
🍀 luck
#RareDisease #ChronicIllness #KidneyDisease #KidneyStones #KidneyTransplant #PH1
We know how challenging it can be to receive a diagnosis for a rare disease such as primary hyperoxaluria type 1 (PH1), it can even feel impossible at times!
Did you know studies have shown patients living with rare disease visit an average of 7 doctors before receiving an accurate diagnosis? How many doctors did you see before receiving yours?
🏥 1-3
🏥 4-6
🏥 7-9
🏥 10+
#RareDisease #ChronicIllness #KidneyDisease #KidneyHealth #KidneyStones #KidneyTransplant #PH1
Living with a rare disease such as primary hyperoxaluria type 1 (PH1) can be overwhelming at times. We get so busy helping other people, trying to keep up with all of our responsibilities... we often run ourselves into the ground!
What is your favorite way to help yourself feel rejuvenated, stress-free, or relaxed? Share your favorite self-care tips below!
#RareDisease #ChronicIllness #KidneyDisease #KidneyStones #KidneyHealth #kidneyawareness #KidneyTransplant #PH1
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