Hypophosphatasia and Crohn’s Disease

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1 of 20 Podcast

Jonathan Cappiello

53 episodes

1 week ago

Jonathan Cappiello was diagnosed with a rare genetic disorder that only 20 people in the world have. The condition is called 3 hydroxyacyl coa synthase deficiency, which in short compromises his immune system and his body cannot process fats. Each week, he will discuss his lifestyle, his diet, and how he adapted to his condition. Additionally, he has a variety of guests to talk about their conditions. If you’re interested in genetics, rare disorders, medicine, and healthy living-- this is the podcast for you!

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Hypophosphatasia and Crohn’s Disease - Aaron Blocker

1 of 20 Podcast

49 minutes 27 seconds

6 months ago

Hypophosphatasia and Crohn’s Disease - Aaron Blocker

Season 5, Episode 10: In conversation with Aaron Blocker

→ Who?: Aaron Blocker is a rare disease patient, content creator and Executive Director of the Mississippi Rare Disease Advisory Council.
He was born showing signs and symptoms of Hypophosphatasia (HPP), but didn’t receive a formal diagnosis until the age of 25.
Since then, he has undergone 27 surgeries related to HPP, including four total hip replacements beginning at age 20. In addition to HPP, he also lives with Crohn’s disease.
He is passionate about advocating for the rare disease community and currently serves as the Executive Director of the Mississippi Rare Disease Advisory Council. Some of the most valuable resources in his rare disease journey have been NORD and the Soft Bones Foundation, which focuses specifically on HPP.
Outside of advocacy, he’s a self-proclaimed science nerd. He holds a Master’s degree in Biomedical Research and works as a Population Health Data and Analytics Consultant for a hospital system. His combination of lived experience and scientific expertise fuels his mission to raise awareness, foster connection, and push for improved care and policy for those affected by rare diseases.
→ Rare Disease Connection: Aaron is a rare disease patient and advocate.
→ What is Hypophosphatasia (HPP)?: Hypophosphatasia is an ultra-rare metabolic bone disease caused by a genetic mutation in the tissue nonspecific alkaline phosphatase (TNSALP) gene. Which doesn’t allow my body to make enough alkaline phosphatase, an enzyme important for bone health.
→ Where to find Aaron?:
@aaronblocker_
→ Resources Aaron shared?:
https://rarediseases.org/mondo-disease/hypophosphatasia/
https://softbones.org

https://medlineplus.gov/genetics/condition/hypophosphatasia
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