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Questions & Answers

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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

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

By A myPNHteam Member 1 answer

Can Ultomiris Or Solmiris Be Passed By Bodily Fluids Contact Such As Seamen? If So Are There Any Possible Side Effects For The Partner

By A myPNHteam Member

What Self-care Practices Help You Manage PNH Best? 🛁🌿

By A myPNHteam Member 2 answers

How Can I Tell If I Have Intravascular Or Extravascular Hemolysis?

By A myPNHteam Member 1 answer
25 questions

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

Hello I am alpstic anemia PNH pesana please help 🙏

August 17

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

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

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

If You Have PNH ,and In My Case Twice I've Had A High D- Dimer Test Results To Be High .

A myPNHteam Member asked a question 💭
Eunice, LA

Who answers these questions??
Is this normal

A myPNHteam Member

Hi every one
I have question and hope I don't sound stupid? At my consultation last week I advised my consultant that often when… read more

August 16, 2023

Are There Any Assistance Out There To Help With Bills And Or Groceries..

A myPNHteam Member asked a question 💭
Eunice, LA
A myPNHteam Member

Try the web site Benefits.gov

October 16, 2023
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