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What are the symptoms?
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Fatigue (the most common symptom)
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Dysphagia (difficulty swallowing)
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Dark urine in the morning (caused by destruction of red blood cells)
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Abdominal pain
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Thrombosis (blood clots), especially in the abdomen
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Lower back pain
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Headache
Typically, patients will experience several,
but not all, of these symptoms.
Who Gets PNH?
PNH may occur at any age, but is most commonly seen in young
adults. PNH may occur as an isolated disorder or in association with aplastic
anemia or myodysplasia.
Is there a Cure?
At this time there is no established medical
treatment for PNH, although a new medication is currently in clinical trials.
Patients may take iron and folate to help replace what they have lost through
the destruction of their blood cells. Individuals may also take a blood thinner
to help prevent a blood clot. Some patients also require repeated blood
transfusions, which may lead to other problems.
The only cure for PNH is a bone marrow
transplant. This procedure has high risks and is a last option for most people.
What is the prognosis for someone with PNH?
At this time patients with PNH have an average life span of
only 10 years. However, new research suggests this number may need to be
changed to reflect a longer average life span.
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