Transcribed
PHACE Syndrome Awareness Week and Congenital Heart Defects
Mar 23, 2024 ·
33m 11s
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PHACE Syndrome Awareness Week and Congenital Heart Defects
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Description
What is PHACE Syndrome? Why is it important to the congenital heart defect community? Tune in to this episode featuring Alexis Sinclair as she shares with The CHC Podcast team...
show more
What is PHACE Syndrome? Why is it important to the congenital heart defect community?
Tune in to this episode featuring Alexis Sinclair as she shares with The CHC Podcast team her experiences with her child who was born with PHACE syndrome. While the most obvious component of PHACE syndrome are red splotches on the skin called hemangiomas, the second most prevalent condition is a cardiac condition, usually coarctation of the aorta. Fully 41-67% of children with PHACE syndrome are plagued by congenital heart defects, and in the case of Alexis' daughter, this is the most concerning element of her rare disease.
PHACE Syndrome affects one in a million people that we know of. This syndrome was only fairly recently put into the medical journals. Over the last two decades, more treatments have become available and awareness is of paramount importance in getting help for those suffering from PHACE syndrome.
Join our Hosts, Ayrton Beatty and Annie Ulchak as they interview Alexis Sinclair. In the second segment of the episode, you'll have a chance to hear from Volunteers and Patrons (if you'd like to join in future episodes, see the links below to become a Patron), and in the 3rd segment, Producers Anna Jaworski and Nicholle Bilodeau share their thoughts on the episode as well.
For more information, this link may be helpful:
PHACE Syndrome Community: https://www.phacesyndromecommunity.org/
If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/support
If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com
show less
Tune in to this episode featuring Alexis Sinclair as she shares with The CHC Podcast team her experiences with her child who was born with PHACE syndrome. While the most obvious component of PHACE syndrome are red splotches on the skin called hemangiomas, the second most prevalent condition is a cardiac condition, usually coarctation of the aorta. Fully 41-67% of children with PHACE syndrome are plagued by congenital heart defects, and in the case of Alexis' daughter, this is the most concerning element of her rare disease.
PHACE Syndrome affects one in a million people that we know of. This syndrome was only fairly recently put into the medical journals. Over the last two decades, more treatments have become available and awareness is of paramount importance in getting help for those suffering from PHACE syndrome.
Join our Hosts, Ayrton Beatty and Annie Ulchak as they interview Alexis Sinclair. In the second segment of the episode, you'll have a chance to hear from Volunteers and Patrons (if you'd like to join in future episodes, see the links below to become a Patron), and in the 3rd segment, Producers Anna Jaworski and Nicholle Bilodeau share their thoughts on the episode as well.
For more information, this link may be helpful:
PHACE Syndrome Community: https://www.phacesyndromecommunity.org/
If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/support
If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com
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