Paroxysmal Nocturnal Hemoglobinuria (PNH)

Biting into the Elephant

I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong, but they didn’t know what it was.

Clear Communication with Your Provider

Today, limited appointment times, overwhelming and confusing volumes of information available on the Internet, coupled with the stress of having a rare disease diagnosis, might mean patients don't always get the answers they need to make informed decisions about their care. Clear communication can  have a positive impact on patient satisfaction, treatment adherence, and self-management.  Improving communication in any relationship is helped by respect for each other and the ability to manage expectations.

Daria Babushok, MD, PhD

Institution
Hospital of the University of Pennsylvania
Physician Status
accepting new patients
Primary Disease Area of Focus
Aplastic Anemia
Myeloproliferative Neoplasms (MPN)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
About
Daria Babushok’s research is focused on understanding the genetic changes that can arise in the bone marrow of patients with aplastic anemia, and on how they affect the patients’ prognosis and treatment outcomes. Dr. Babushok has completed a clinical hematology-oncology fellowship at the Hospital of the University of Pennsylvania, and is currently a junior physician-scientist investigator at the University of Pennsylvania under the mentorship of Dr. Monica Bessler. In a study recently published in the journal of Cancer Genetics and conducted with the support of the AA&MDS International

PNH Foundation Announces Grants For Patients

The PNH Research and Support Foundation seeks to ensure that all PNH patients can see a PNH specialist to pursue the best course of treatment. The Foundation also helps patients with costs related to stem cell transplants in cases where this treatment is required. The PNH Foundation may be able to provide financial aid up to $3,000 per eligible, U.S.-based PNH patient with demonstrated financial need for the following costs:

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