Home > Patient Profiles > Patient Journey

PNH patient journey:

Living with PNH disease can be challenging

The journey to diagnosis can be long and can take a mental toll on patients with PNH

Diagnosis1

  • ~24% of all PNH diagnoses can take 5 years or longer
  • ~60% take longer than 1 year to diagnose

Diagnosis can be difficult

Diagnosis delay can be a source of distress and affect patients’ emotional well-being2

Hear Scott’s story

alt="" aria-hidden="true" />

DEBILITATING FATIGUE3-5

A majority of patients (80%)
with PNH report experiencing
fatigue, which can result in
decreased physical activity
and quality of life

PNH symptoms can be overwhelming

Hear Victor’s story

style="filter:blur(5px);height:100%;object-fit:contain;width:100%;" alt="" aria-hidden="true" />

Hear more patient stories

Visit PNHSource.com

PNH Resources

PNH signs and symptoms

Learn how to recognize the signs and symptoms of PNH in your patients

Download resource
PNH brochure

Review the PNH disease
education brochure

Download resource

PNH=paroxysmal nocturnal hemoglobinuria.

Discover helpful resources to give to your patients
References
  1. Shammo JM, et al. Blood. 2015;126(23):3264.
  2. Mitchell R, et al. SM Clin Med Oncol. 2017;1(1):1-4.
  3. Schrezenmeier H, et al. Haematologica. 2014;99(5):922-929.
  4. Ueda Y, et al. Int J Hematol. 2018;107(6):656-665.
  5. Escalante CP, et al. Cancer Med. 2019;8(2):543-553.