Sabrina Marie Vera is a proud first-generation college graduate, Puerto Rican woman, and HHT survivor. She and her family suffer from Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic blood disease that took brother Robert’s life 15 years ago. HHT affects about 1.4 million people worldwide and has no cure. Sabrina graduated from Pomona College with a B.A. in Politics as a proud Gates Millennium, Chicago Posse, and Coca-Cola scholar. For her senior project “How the Marginalized Mobilize,” Sabrina explored the political theory underpinnings of activism in three distinct communities that all relate to her identity. She looked at disability rights activism in reunified Germany, digital queer activism in the MENA region post-Arab Spring, and the radical, anti-colonial activism of Puerto Rican Americans in the late 1960s. Sabrina, along with her mother, is the co-founder of the social change initiative and online platform Living with HHT, which connects over 2,000 patients worldwide suffering from HHT from all over the world, from New Zealand to India. Sabrina plans on going to law school after her gap years as a Global Writing and Speaking Fellow at NYU Shanghai. Her goal is to be a lifelong advocate for people with rare and chronic diseases both in and out of the courtroom.
Tune in as Sabrina shares:
- that HHT is genetic, and runs in her family
- that HHT causes the development of AVMs (arteriovenous malformations, which cause a tangle of blood vessels that disrupt normal blood flow), which require surgery to repair
- that HHT can seemingly affect anybody, regardless of race or gender; 90% of HHT patients also remain undiagnosed
- how race and gender have affected her experiences in the healthcare system
- that in the past, she has been rendered invisible, and not believed (in the healthcare system)
- that about 50% of HHT patients experience a chest pain called pleurisy — and not enough research has been done to prove whether or not pleurisy is caused by AVMs, repair coils, or HHT itself
- that she has a cerebral AVM, and her brother died from a stroke and seizures caused by one
- the problems with mental health support in the US healthcare system, particularly for those who are living with comorbid chronic conditions
- how important it is for her to bring her culture and her pride to any table at which she sits
- why claiming her sexuality is so important to her — and that for women, sexuality and success are NOT mutually exclusive
Pick up your FREE copy of Hacking Healthcare: A Resource Guide -- designed to make your experience in the healthcare system more accessible: here!
Transcript coming soon!
In the meantime, check out this past episode on another rare blood disorder: