# @biohub on Instagram

- **Type:** Image
- **Original URL:** https://www.instagram.com/p/C48g5XkJDKo
- **Gondola URL:** https://gondola.cc/posts/57456558-biohub-instagram
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/postThumbnails/ed8ff1e07e.jpg
- **Posted:** 2024-03-25T17:25:27.000+00:00
- **Account Owner:** Biohub (@biohub) — https://gondola.cc/biohub

## Caption

“I can’t sit on the sidelines. I want to help.”

After his son JB was diagnosed with the rare disease Hereditary Hemorrhagic Telangiectasia (HHT), Riley got a brain scan just to be safe. That scan revealed a brain arteriovenous malformation—a tangle of blood vessels that can cause hemorrhages, brain damage and even death.

Riley and his family are very familiar with the brain arteriovenous malformations that HHT can cause. Riley's dad, brother, cousins and aunts all have the disease. His uncle died from a brain arteriovenous malformation before his family knew it was caused by HHT. 

 “When JB was diagnosed I felt guilty. This was my fault. I gave this to him. I was mad. I was scared. I was angry. But I also remember feeling something else, and that's thankful. Thankful our family has a diagnosis when so many others to this day don't.” 

It's estimated that up to 90% of HHT patients remain undiagnosed. Riley is thankful he knew to get his son tested and scanned early. Arteriovenous malformations often don't present with any symptoms at all. Too many kids go to bed with a headache and never wake up because of a brain bleed. That could have been JB.

Riley decided to work with @cure_hht to help reduce the number of undiagnosed cases, connect patients and families, and educate physicians and healthcare professionals. 

#RareAsOne #RareDisease #research #biology #scicomm #science #RareDiseaseAwareness #patients

## Stats

- **Views:** 0
- **Likes:** 238
- **Shares:** 0
- **Comments:** 9

## Credits

| Name | Username | Profile | Role |
| --- | --- | --- | --- |
| Chan Zuckerberg Initiative | @ChanZuckerberg | https://gondola.cc/ChanZuckerberg | Non-Profit Organization |
| Tony | @tonyamrich | https://gondola.cc/tonyamrich | Social Media Manager |

## Tags

science, research, scicomm, rarediseaseawareness, patients, rareasone, biology, raredisease

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