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Real members of myPNHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Featured Q&A

Does This Disease Also Cause Overly Large Red Blood Cells?

By A myPNHteam Member
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What Lifestyle Adjustments Have You Made To Better Manage Your PNH? 🏃‍♀️🥗

By A myPNHteam Member 2 answers
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Many Questions

By A myPNHteam Member
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What Self-care Practices Help You Manage PNH Best? 🛁🌿

By A myPNHteam Member 2 answers
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27 questions

My Lab Results. They Show Low Platelets Still. In 4 Yrs Only 1 Time Have The Values Reached Low Normal

A myPNHteam Member asked a question 💭
A myPNHteam Member

Low platelet levels in PNH can be due to bone marrow failure or the destruction of platelets. Persistent low levels over years may indicate ongoing bone marrow issues. It's essential to discuss these… read more

January 4

Many Questions

A myPNHteam Member asked a question 💭

What Lifestyle Adjustments Have You Made To Better Manage Your PNH? 🏃‍♀️🥗

A myPNHteam Member asked a question 💭
San Francisco, CA

Share the changes you’ve implemented in your daily routine, diet, or exercise that have helped you manage your PNH symptoms.

Comment below with your lifestyle adjustments and let’s support each other in improving our quality of life! 💬

A myPNHteam Member

With the PNH, Anemia X3 and Thrombocytopenia I've had start eating more protein and it doesn't have to be read meat chicken has lot of protein as well as veggies. I've also found the more I get up an… read more

December 10, 2024

I Bet U 10$

A myPNHteam Member asked a question 💭
United States ga

Can I Smoke Real Quick

A myPNHteam Member asked a question 💭
Versailles, MO
A myPNHteam Member

No

April 5, 2024

My Partner Has PNH And Has Covid Can He Still Get His Treatment?

A myPNHteam Member asked a question 💭
Leesburg, FL

He hasn't been officially confirmed with Covid but I have and he has symptoms

A myPNHteam Member

For someone with paroxysmal nocturnal hemoglobinuria (PNH) who has contracted COVID-19, it's crucial to consult with their healthcare team. Treatment plans may need adjustments based on their current… read more

August 1, 2024

How Everyone Doing Today

A myPNHteam Member asked a question 💭
530 N Williams st Dayton Ohio 45402
A myPNHteam Member

Hi I am blessed with another day doing well, I pray all of you are as well

November 26, 2023

The First Time You Have A Problem Is If You’re Going Through Something And You’re Trying Something New

A myPNHteam Member asked a question 💭
Adak, AK

What Causes Pñh

A myPNHteam Member asked a question 💭
Aberdeen, NC

What Causes Pnh

A myPNHteam Member asked a question 💭
Aberdeen, NC

What is pnh blood dieàse

A myPNHteam Member

In my situation my Doctor has taught me that most often it develops in the body when out body stops creating the "pigga" gene the protein coating on the outside of of our RBC . As a result the body… read more

November 26, 2023
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