What the HHT?

A blog for the HHT community

Posts Tagged ‘Cure HHT’

Unexpected: Living with Crohn’s Disease, Depression…and HHT Too

Man, I don’t know where to start, so I’ll just jump right in: HHT (Hereditary Hemorrhagic Telangiectasia) is a rare illness and I’m one of the people who has it.  As a survivor, it is my duty to share my story — Life is Complicated I already had a complicated medical history—asthma, Crohn’s disease, depression—so…

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Cure HHT Official Health Updates: Coronavirus Disease (COVID-19)

CURE HHT OFFICIAL STATEMENT COVID-19 Traducción Española Update:  August 6, 2020 | COVID-19 TESTING Scott Olitsky, MD, MBA – Cure HHT Chief Medical Officer James R. Gossage, MD – Director, Augusta University HHT Center of Excellence   Nasal swab testing for COVID-19 can be problematic for HHT patients because of the risk of inducing a…

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‘You got blood on your face, you big disgrace’

Currently, one of the most prized possessions our kids have is the Queen Greatest Hits CD. When Eleanor was a baby, we played Bohemian Rhapsody by Queen or the Muppets version for her every time she needed an echo or to have a test done at the hospital. The love of Queen passed to Theo and the CD is queued up in the car ready to go. Right now, We Will Rock You is…

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SURVEY: COVID-19 and Rare Disease Research

Cure HHT has partnered with Genetic Alliance and we need your help! Your voice is urgently needed in the fight to end COVID-19 through a 5-minute survey. You can fight this virus with information and without leaving home! Whether you are currently feeling healthy or in need of medical attention, understanding YOUR specific circumstances can help scientists study…

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Cure HHT Actualizaciones Oficiales de Salud: Coronavirus Disease (CV)

CURE HHT DECLARACIÓN OFICIAL:  CORONAVIRUS (CV) Traducido por Marcel Serra, MD – Director, Unidad HHT Hospital Italiano de Buenos Aires Ponerse al día: 17 de Abril 2020 BLOOD CLOTS, COVID-19 and the HHT COMMUNITY Guidance from the North American Cure HHT Scientific and Medical Advisory Council Authors: Dr. Raj Kasthuri, Director, University of North Carolina,…

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