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How Is PNH Managed?
How Is PNH Managed?
Quick facts about managing PNH.
- PNH is manageable
- It is important to address PNH early and aggressively
- Lowering hemolysis is a primary goal of PNH management
- Take advantage of support from your healthcare team, family and friends, the PNH community and OneSource
PNH can be life threatening. But with the right treatment, people with PNH can live long, full lives.
It is important to explore your options and begin managing PNH early – and aggressively. By working closely with your doctor, you may be able to keep the risks of PNH at bay and live a fuller life.
Together, you and your doctor will track:
- Your symptoms:
Stomach pain, difficulty swallowing, shortness of breath, fatigue, and erectile dysfunction, among others - Your lab results:
Lactate dehydrogenase (LDH) as a measure of hemolysis, hemoglobin (Hgb) levels, and others
Because most of the dangers of PNH are caused by ongoing hemolysis, lowering it is a primary goal of managing PNH.
Speak with your doctor about what you can do to make this happen.
Get the help you need every step of the way
PNH can be a scary disease. But understanding how it works in your body can help you see it differently.
It is possible to manage PNH. And, even though it’s a rare disease, you don’t have to do it alone.
There are a number of people and resources available to help you take control of PNH.
Your healthcare team
Together, you and your doctor and nurses can develop a plan to address your PNH and watch your progress.
But your healthcare team is not just a source for managing PNH — they’re also a source of information. Feel free to ask them any questions about PNH.
Your loved ones
PNH can take a lot out of you, so it’s important to lean on friends and family for support.
Be sure to let them know what PNH is and how you’re feeling day to day. That way they’ll know when they need to reach out to lend a helping hand.
Your PNH community
PNH is a rare disease, but that makes those who have it that much closer. Connect with others with PNH to help you learn about, cope with, and confront your disease.
There are a number of online resources you can use to find support.
OneSource™
Sometimes you just need to talk to someone who understands. Through OneSource, you can do just that.
With one phone call, you can reach a Nurse Case Manager who can provide information and helpful tools to help you manage your PNH. They can connect you with other people who have the disease.
Call OneSource at 1-888-765-4747 for useful information and personalized support from a registered Nurse Case Manager that you may find helpful as you manage your PNH.
Ask questions. Find answers. And do something that you may not be able to do with others: talk about your disease.
Finding a treatment that fits.
While PNH is serious, a lot is known about the disease and it is possible to manage PNH. Speak with your doctor to find one that’s right for you.
MYTH: My PNH is only bad when I don’t feel well
With PNH, you can have serious health problems even if you feel fine. Be aware of how you’re feeling and let your doctor know. This will help you both manage your PNH in the best way possible.
Available to people with PNH and their caregivers.
Call with no obligation:
1.888.765.4747
Monday - Friday
8:30 AM to 5 PM