Your doctor may not understand what you mean when you say you're tired or feeling fatigued. In a discussion about symptoms, others with PK deficiency gave examples of more vivid descriptions they used with their doctors:
Which of these symptoms do you have and which bother you the most? Are there any you’re just starting to notice, or that you didn’t think could be related to your PK deficiency?
Select your symptoms and download a list to share with your doctor:
Bilirubin: A substance created from hemoglobin when RBCs break down, which can cause jaundice and scleral icterus
Jaundice: Yellowing of the skin caused by high levels of bilirubin in the body
Scleral icterus: Yellowing of the whites of the eyes caused by high levels of bilirubin in the body
PK deficiency affects more than just the body. In a poll, people with PK deficiency and their caregivers reported feeling anxiety, depression, low self-esteem, and social isolation. It’s important to talk to your healthcare provider if you experience any of these mental health challenges.
Be your own advocate…find
somebody willing to listen to you.
Be your own advocate…find
somebody willing to listen to you.
Understand what to look for to help
keep your doctor informed