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How did you feel when you received your rare disease diagnosis?

A rare disease diagnosis can be overwhelming if you are not expecting it. Even if you have been awaiting your diagnosis for a while, it can take time to process. Sometimes this includes grieving your “old” identity before you were diagnosed.

If you have been diagnosed with a rare disease, how did you feel? Did you have to grieve or mourn the loss of your old identity? Or did it feel like a huge relief to place a name to what you’ve been going through?

Share your experience in the comments below. ⬇️

#RareDisease #ChronicIllness #KidneyDisease #KidneyStones #KidneyHealth #PH1

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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 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

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What helps you get better sleep?

We know that a rare disease can impact a person’s sleep schedule, from insomnia, to fatigue, to struggling to get out of bed.

If your rare disease has affected your sleep in some way, what helps you? What advice do you have for someone struggling to catch some quality rest?

Share your experience and suggestions in the comments below.

#RareDisease #ChronicIllness #KidneyDisease #KidneyHealth #KidneyStones #PH1

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How do you relieve stress?

Balancing self-care and daily responsibilities while managing the symptoms of a rare disease 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 #ChronicIllness #KidneyDisease #KidneyStones #KidneyHealth #PH1

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How do you talk to others about your rare disease?

Deciding what to share about a rare disease can be challenging for patients and their loved ones. What is most challenging about having these conversations? What has been most rewarding? Share your experiences in the comments below. ⬇️

#RareDisease #ChronicIllness #KidneyDisease #KidneyStones #KidneyHealth #PH1

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What do you wish you had more of?

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

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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 primary hyperoxaluria type 1 (PH1) is explaining the rare disease to others (whether your doctor, family, friends, or strangers).

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

#RareDisease #ChronicIllness #KidneyStones #KidneyDisease #KidneyHealth #PH1

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Food & Nutrition Friday: Diabetes and Kidney Diet

A diabetes diet, in general, looks pretty much like a healthy diet for everybody that includes fruits, vegetables, healthy fats, and lean proteins, but has less salt, sugar, and foods high in refined carbohydrates (cookies, crackers, and soda). Carbohydrate intake depends on your age, activity level, and medications.

Chronic Kidney Disease diets favor foods that give you energy and nourishment while avoiding or limiting certain foods that can damage your kidneys. Dietary advice will vary depending on if you have early-stage or late-stage CKD or are on dialysis.

Many foods that are part of a typical healthy diet may not be right for a CKD diet. Here's some general tips especially for people with kidney disease from the CDC:

- Eat less salt/sodium. That’s a good move for diabetes and really important for CKD.

- Focus on fresh, homemade food and eat only small amounts of restaurant and packaged foods.

- Look for low sodium (5% or less) on food labels.

- Depending on your stage of kidney disease, you may also need to reduce the potassium, phosphorus, and protein in your diet. The right level of potassium keeps your nerves and muscles working well. Too much potassium can build up in your blood and cause serious heart problems.

- Eat the right amount of protein. More protein makes your kidneys work harder and may make CKD worse, however too little isn’t healthy either.

Before starting any new medical treatment or diet, please consult with your doctor or a licensed healthcare professional.

Click the link below for Kidney Disease Diet Tips for People with Diabetes from Very Well Health:

#Diabetes #DiabetesType1 #DiabetesType2 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #DiabetesInsipidus #ChronicIllness #AutoimmuneDisease #KidneyDisease #KidneyHealth #Lifestyle #wellness #HealthCare #Support #MightyTogether

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How many doctors did you see before receiving your rare disease diagnosis?

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

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What is stressing you out right now?

Hey, what’s on your mind these days? Perhaps you’re worried about a new symptom or switching to a new treatment plan. Share what’s stressing you out right now about your rare disease (no matter how big or small) in the comments below by choosing from the below list.

▫️ Managing my rare disease, such as PH1
▫️ Finding the treatment plan
▫️ Communicating with my doctor
▫️ Balancing my health and other responsibilities

Don’t see one that fits how you’re feeling? Add your own status in the comments!

#RareDisease #ChronicIllness #KidneyDisease #KidneyStones #KidneyHealth #PH1

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