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How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth – Sehreen Noor Ali

Once Upon A Gene

How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth – Sehreen Noor Ali

February 10, 2022

How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth – Sehreen Noor Ali

ONCE UPON A GENE – EPISODE 121

How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth – Sehreen Noor Ali

Sehreen Noor Ali is the Co-Founder of Sleuth, a website that compiles stories and information from rare disease parents. It’s a smart technology designed to identify resources, solutions and cures— a growing group of parents working together. Sehreen is talking with me about trauma resulting from medical uncertainty.

EPISODE HIGHLIGHTS

Can you share the medical trauma you’ve experienced?

My youngest daughter was hospitalized for over two months after surgery and went into inpatient rehabilitation afterwards. Then she was hospitalized again for a second surgery before she could go home. I cultivated tools and resources upon learning my daughter was going to need surgery and they served me well. But after we got home and I started to fray at the edges, I realized I was traumatized by the experience.

What most contributed to how you’re feeling?

I was not prepared. My daughter also lost her swallow function and is now completely g-tube fed, which wasn’t supposed to happen. Reconciling that while trying to act normal has contributed to my trauma.

What advice do you have for caregivers?

The thing I believe in most is that the caregiving you’re doing means something really meaningful to other parents on similar journeys. I hope Sleuth is a place people will consider sharing their story because we know how powerful and helpful it can be to share your story. 

LINKS & RESOURCES MENTIONED

Rare and Relatable on Discord

https://discord.com/invite/7UFUPAFs8K

Sleuth Website

https://hellosleuth.com/

TUNE INTO THE ONCE UPON A GENE PODCAST

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https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7

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