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Emotional
Theemotional tollof having a chronic disease can be intense.
Educating yourself about living with PNH is the first step after you are diagnosed.
It can also be tough to cope with the physical and social limitations that the condition can create.
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Managing your stressis an important aspect of living with a chronic disease.
You may experiencesymptomssuch as:
Your doctor might suggest different treatments for your symptoms.
For example, if you are anemic, you might need to take iron supplements or have blood transfusions.
Summary
Chronic disease management can be challenging no matter what your condition is.
With rare diseases, it can be even more difficult to find people and organizations that can provide support.
Johns Hopkins Medicine.Paroxysmal nocturnal hemoglobinuria (PNH).
National Organization for Rare Disorders.Paroxysmal nocturnal hemoglobinuria.
