Paroxysmal Nocturnal Hemoglobinuria (PNH)
"PNH is a Part of Me" - Anta Sene finds that acceptance leads to hope
My name is Ndeye Anta Sene. I am 22 years old and live in Maryland. I was born in Senegal, in West Africa and in December 2007 came to the United States by myself at age 16 due to medical issues.
H. Joachim Deeg, MD
Amy E. DeZern, MD, MHS
Michael Keng, MD
Rami Komrokji, MD
Stephanie Halene, MD, PhD
Patient Advisory Council
The AAMDSIF Patient Advisory Council (PAC) was created in 2008. Its purpose is to serve as a resource to the AAMDSIF staff in the development and review of patient education materials, programs and services.
Special Issues for People with PNH
Because you have PNH, everyday events can be more risky for you than for healthy people. Here are some examples.
How do I get my medical records from a doctor?
If you want a copy of your medical records, you must submit a written request to the hospital or the doctor's office. The law requires that patients provide doctors with written authorization to disclose medical records or the information contained in them. Some hospitals have their own form that needs to be completed. Patients may receive copies of their medical records, however the originals must remain in the physician's or hospital's file. Please consult with your physician's office for access to digital records.
