Living with a rare medical condition – HHT

This week we spoke with Mary Ellyn Parker about living with a rare medical condition called Hereditary Hemorrhagic Telangiectasia. She worked as a nurse in the Niagara Region for over 30 years and in 2001 she was diagnosed with HHT. She spoke about the challenges of finding a diagnosis for her symptoms and the experiences of switching from being someone who is used to giving care to now having to depend on others. A critical message that Mary Ellyn spoke about is the importance of physicians listening to patients and really hearing what they have to say.

To understand more about Hereditary Hemorrhagic Telangiectasia go to Hereditary Hemorrhagic Telangiectasia Foundation International.

If you would like to contact Mary Ellyn you can reach her at

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