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
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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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
Take what you need or add your own in the comments below, Mighty fam!
energy time support fun connection rest encouragement good weather peace pain-free moments stability motivation distraction strength patience luck
#Rare #RareDisease #ChronicIllness #KidneyDisease #KidneyHealth #kidneyawareness #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
What’s your favorite way to keep track of your health? Do you keep a bullet journal or simply jot things down in a notebook? Do you use an app? Or do you use something entirely different? Let us know how you track your health in the comments below!
#RareDisease #ChronicIllness #KidneyDisease #KidneyStones #KidneyHealth #kidneyawareness #PH1
One of the most valuable things we can do for each other is pass along tips, tricks, warnings and lessons to others who live with the same health condition. Lived-in patient experience can’t be beat, and this community is rich in its wisdom and bursting with compassion.
In the comments below, share one piece of advice you would give to someone who lives with a kidney condition. Sharing is caring. You know what to do! 🥰
#ChronicIllness #RareDisease #KidneyDisease #kidneyawareness #KidneyHealth #KidneyStones #PH1
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