Share your story

Did you read the personal testimonials on this website? Several patients with Pyruvate Kinase Deficiency shared their story to help other patients or parents with a child affected by to Pyruvate Kinase Deficiency understand how the disease affected their life.

If you’d like to share your story, please send us your story using the contact form below. We will publish it mentioning only your gender, age and country. If you prefer, you can also send your story in French or in Dutch, we will try to translate it in English.

What could you mention in your story?

  • How and when did you discover you (or your child) have Pyruvate Kinase Deficiency ?
  • How often do you need blood transfusions? Do you need chelation therapy?
  • Has your spleen and/or gallbladder been removed?
  • How is your Pyruvate Kinase Deficiency begin monitored and what follow up do you have?
  • How does the disease generally affect your everyday life?

Thank you for contributing and sharing your experience!

 

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