KidneyStones

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

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

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

We made it through another week, hooray! Reflecting on the last few days, what was a bright spot for you? (No answer is too small, by the way, the sun coming out and providing literal brightness totally counts!)

My personal highlight - went out to dinner with one of my childhood best friends who is back in town for the week!

Share your super moment from the week below! 👇

#RareDisease #KidneyDisease #KidneyStones #PrimaryHyperoxaluriaType1 #DistractMe

Hi there! My name is Vy. I’m your new group leader for PH1 Support and a member of The Mighty’s staff. I’m here to share information and resources related to primary hyperoxaluria type 1 (PH1), as well as ask questions about your experiences and support you through your health journey.

I’m so happy to be here! Feel free to say hi in the comments below and tell me what your favorite movie series is. Mine is the Harry Potter series!

#RareDisease #KidneyDisease #KidneyStones #PrimaryHyperoxaluriaType1 #DistractMe

The symptoms of PH1 can impact your child at school, but there are things you and your child’s teachers can do to help them succeed. What has helped your child succeed in school?

Share in the comments below. ⬇️

#KidneyDisease #Kidney #KidneyStones #RareDisease #ChronicIllness #Parenting #PH1

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

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

Balancing self-care and daily responsibilities while managing the symptoms of PH1 can be challenging, especially when you're experiencing increased levels of stress.

How do you relieve stress as it relates to PH1? Share and help one another in the comments below (who knows, you might just pick up a new technique!).

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