PNH Community Stories

Real stories from real people about the disease — and Soliris® treatment

If you or a loved one is affected by paroxysmal nocturnal hemoglobinuria (PNH), you're not alone. While these stories — like PNH — are unique to each individual, confronting PNH with strength and courage is something everyone touched by the disease shares.

As you read the following stories, remember that your own experiences may differ from those described because the signs and symptoms of PNH are highly unpredictable and vary from patient to patient.1 Chronic hemolysis (the destruction of red blood cells) is the underlying cause of the signs and symptoms associated with PNH in all patients. Keep in mind that even if you can’t feel it, hemolysis is constant and potentially life threatening.2 Serious health complications, such as blood clots, kidney failure, and damage to vital organs, can result if PNH is not treated early.1

Community Videos


Maria

Maria was a young mother with two small children when she found out she had PNH.

Community Stories


Drew

Twenty-year-old Drew is living his dream — he’s pitching college baseball. But his dream almost became a nightmare when he learned he had PNH.


Margarita

Only 17 years old, Margarita was devastated when she learned she had PNH.






IMPORTANT SAFETY INFORMATION

WARNING: SERIOUS MENINGOCOCCAL INFECTIONS

Soliris increases the risk of meningococcal infections. Meningococcal infection may become rapidly life-threatening or fatal if not recognized and treated early

  • Vaccinate patients with a meningococcal vaccine at least 2 weeks prior to receiving the first dose of Soliris; revaccinate according to current medical guidelines for vaccine use
  • Monitor patients for early signs of meningococcal infections, evaluate immediately if infection is suspected, and treat with antibiotics if necessary

The effect of anticoagulant withdrawal during Soliris treatment has not been studied. Therefore, treatment with Soliris should not alter anticoagulant management.

Soliris is generally well tolerated. The most frequent adverse events observed in clinical studies were headache, a runny nose (nasopharyngitis), back pain, nausea, and tiredness (fatigue).

Please see full prescribing information for SOLIRIS, including boxed WARNING regarding serious meningitis.


References: 1. de Castro CM. Paroxysmal Nocturnal Hemoglobinuria (PNH) Basic Explanations. Annapolis, MD: Aplastic Anemia & MDS International Foundation; 2006. 2. Hillmen P, Young NS, Schubert J, et al. The complement inhibitor eculizumab in paroxysmal nocturnal hemoglobinuria. N Engl J Med. 2006;355:1233-1243.