Living with dysfibrinogenemia

Dysfibrinogenemia is a rare bleeding disorder that runs in families.

Kimberley's story

Kimberley was diagnosed with dysfibrinogenemia when she was 24.

In this video, she describes her experience of living with the condition. She explains:

• what dysfibrinogenemia is
• how it felt to be diagnosed with the condition
• signs of the condition
• what happened when she started planning for a family
• her daughter's experience of also having the condition, and helping her to cope
• advice on living with dysfibrinogenemia

What is dysfibrinogenemia?

Dysfibrinogenemia is a bleeding disorder. In dysfibrinogenemia, a protein in the blood called fibrinogen does not work as it should. This raises the risk of bleeding.

Support with dysfibrinogenemia

In her video, Kimberley talks about some things that help her deal with dysfibrinogenemia. She suggests that you:

• turn to patient support organisations for practical and emotional support
• should not be afraid to ask questions or get help
• think of questions before attending a hospital appointment and write them down

Kimberley also explains how a teddy has helped her daughter to cope with having a rare condition. She says the teddy also has dysfibrinogenemia, so it attends her daughter's hospital appointments. This helps her daughter understand her condition and eases her anxiety.

Find out more about rare conditions, including support and information.

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