PNH Awareness


PNH Source

This episode of Access Health is dedicated to an extremely rare disease called PNH-Paroxysmal Nocturnal Hemoglobinuria.  Join us as we visit with a world renowned Hematologist to discuss pnh awareness and to talk with two patients who share their journeys to diagnosis of this rare disease on this segment of Access Health!

Access Health

Behind the Mystery: PNH

This devastating rare blood disorder has diverse symptoms

What is PNH?

Paroxysmal Nocturnal Hemoglobinuria (PNH) is a deadly, rare disease with a prevalence of around 5 patients per million

he disease has a devastating morbidity and mortality, with 35% of patients dying within 5 years of diagnosis, even when treated with anti-coagulants, steroids and blood transfusions

Symptoms are diverse and common:

- Severe fatigue
– Stomach pain
– Tightness around neck
– Trouble swallowing
– Erectile dysfunction
– Dark urine
– Unusual blood clots
– Impaired quality of life and many others

PNH patients’ age of diagnosis ranges from pediatric to adults, with the median age being 30 years.

Check out for information and videos about the disease and testing.

Learn more about PNH and a new diagnostic test by watching the recent segment airing on Access Health with Hemotologist and Oncologist Dr. Elizabeth Griffiths from Roswell Park Cancer Institute here:

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Access Health® Dedicates Show to Raising Awareness about PNH, A Rare Blood Disease, on Wednesday, February 11 on Lifetime®

Dr. Elizabeth Griffiths from Roswell Park Cancer Institute, and one of the few doctors in the world who has diagnosed and treated PNH, joins Host Ereka Vetrini and expert panelists to discuss this potentially deadly disease and a new diagnostic test.

(POMPANO BEACH, Fla. – PR.Com – February 4, 2015) Access Health®, a new magazine-style health and wellness series will dedicate an entire 30-minute episode to the rare blood disease PNH, which stands for Paroxysmal Nocturnal Hemoglobinuria, a rare and potentially life-threatening disease, on Wednesday, February 11 at 7:30 a.m. (ET/PT) on Lifetime.

Access Health educates viewers as it tackles the important health and wellness topics of the day, including innovations in fitness, medicine and food such as women’s and children’s health, the best ways to get one’s body moving, how to prepare good-tasting and healthy meals, the newest medical practices, and insights to empower women and give them access to healthier living.

In this third episode, “PNH-Rare Blood Disease, Simple Diagnostic Test”, Host Ereka Vetrini and the show’s Medical Expert Dr. Dennis Holmes, Certified Nutritionist Janet Zappala and Fitness Expert Dave Sinclair delve deeper into the subject from the perspective of their own specialty.

Dr. Elizabeth Griffiths, Hemotologist and Oncologist from Roswell Park Cancer Institute, and one of the few doctors in the world who has diagnosed and treated PNH, joins Host Ereka Vetrini to discuss this rare and potentially deadly disease, its definition, rarity, symptoms — which may be common to other medical conditions – and devastating mortality rates.

Dr. Griffiths will enlighten viewers about a new diagnostic blood test now available, and new options to manage the disease that are giving hope to patients and doctors.

Two special guests will join the set for the “Faces Behind PNH” and “Facing PNH” segments to talk about what it feels like to be a patient with this mysterious and rare disease, and the PNH resources and community of support they became a part of.

For more information, please go to:

Access Health was created by O2 Media, producers of the long-running branded entertainment shows The Balancing Act®, Designing Spaces®, Mission Makeover®, and All Mixed Up™ all currently airing on Lifetime.

About Access Health
Access Health® is a powerful and engaging half-hour health and wellness series premiering on the Lifetime® channel, anchored by a panel of three renowned experts who tackle the important fitness, medical and nutrition topics of the day. The show educates and entertains with ideas on the best ways to get your body moving, revolutionary cuisine and the newest medical practices, all to empower women and give them access to healthier living.

To learn more about Access Health and to view a prior episode, please visit:
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(954) 691-1102

  • Joe Boyd

    This was fine for people to hear because it is such a rare problem, and is many times misdiagnosed. But, it was not useful at all for someone who wants to know what treatment/treatments are available for the disease. Whether a person recognizes symptoms or has had a confirmed diagnosis, they are mainly interested in knowing about treatment. This program gave no clue in that direction…….from a PNH patient……..JB