Living with an Incredibly Rare Disease: Mitchell's Story

TLDRMitchell is one of two people in the world with an incredibly rare and untreatable disease. Despite facing numerous challenges, he remains positive and hopeful for the future.

Key insights

💪Mitchell's disease is so rare that doctors don't even have a name for it.

🔍After joining the Undiagnosed Diseases Network, Mitchell found the only other person with the same gene mutation.

💔Despite his diagnosis, Mitchell knows that there are no guarantees for a cure or treatment.

👨‍👩‍👦‍👦Mitchell hopes to find love and have a family, but acknowledges the challenges he may face.

Mitchell's positive attitude and strength inspire those around him.

Q&A

What is Mitchell's disease?

Mitchell's disease is an incredibly rare and untreatable disorder caused by a mutation in the ACOX1 gene.

How did Mitchell find out about his diagnosis?

Through the Undiagnosed Diseases Network, Mitchell connected with the only other person in the world who has the same gene mutation.

Is there a cure or treatment for Mitchell's disease?

Currently, there is no cure or treatment for Mitchell's disease. Research is ongoing to better understand the disorder.

What are Mitchell's hopes for the future?

Mitchell hopes to find love, have a family, and continue inspiring others with his positive attitude and strength.

How does Mitchell cope with his condition?

Mitchell remains positive and strong, despite the challenges he faces. He finds support from his loved ones and hopes to bring out the goodness in those around him.

Timestamped Summary

00:00Mitchell is one of two people in the world with an incredibly rare and untreatable disease.

03:33After years of searching for a diagnosis, Mitchell found the only other person with the same gene mutation.

05:18Despite his diagnosis, Mitchell knows that there are no guarantees for a cure or treatment.

08:13Mitchell hopes to find love, have a family, and continue inspiring others with his positive attitude and strength.