Patient Experience: Poland Syndrome the problems beyond diagnosis - a treatment odyssey

What’s Inside?

Tamsyn is a scientist and dynamic business leader, who runs an innovative regulatory affairs organisation, but who has struggled to get the recognition, treatment and support she needs for her rare condition – Poland Syndrome.

"The problems really started after diagnosis in terms of where different parts of the healthcare system interact and the failure to have a clear treatment path, especially on the mental health side of things."

This blog covers Tamsyn's journey to diagnosis and treatment, and is part of a series that Volv is working on to understand and share more about rare disease patient experiences:

• Information on Poland Syndrome 
• Unnecessary treatment 
• The need to educate clinicians
• The need to create self-help groups
• Why empowering people to be themselves is so important