The first episode of the National MPS Society's Podcast: Our Voices with Jason Madison. Join us as we raise awareness for National Rare Diseases day on February 28th with a focus on the importance of advocacy. We share a story of a young woman and her journey to find treatment and healthcare far from home.
Show Notes
On this episode:
- Jason interviews Isabel Bueso (born Maria Isabel Bueso Barrera), a Guatemalan activist with MPS, living in the United States under deferred action.
- After receiving an unexpected threat of deportation which meant no longer receiving her life-saving treatment and having to leave the only life she knew, this young woman recognized something had to be done. Over a span of a few weeks her call to action was received with outpouring community support.
- She went from relative obscurity at the mercy of circumstances to speaking in front of an emergency subcommittee hearing in Congress. She not only advocated for herself, but for the entire rare disease community.
- Her brave testimony has contributed to life-saving policy changes.
- Isabel shares her story of diagnosis and early treatment as a young child in the United States.
- Isabel and her family relocated to California to continue her life-saving treatment. Since they are not citizens, their status had to be renewed every three years to continue receive treatment in the US.
- One day, after an infusion, she received news that would change Isabel and her family's lives drastically. Their immigration status was denied and they were given 33 days to leave the country.
- Isabel describes how her journey felt from receiving the news about her immigration status to walking into Congress to tell her story. An audience from both sides of the aisle she had only seen previously on television.
- After her testimony to Congress, the 33-day deadline continue to approach. Representatives put a hold on the deadline while they discussed it, and finally with much anticipation, decided to reverse the policy. Isabel and those she advocated on their behalf were now able to stay and get the life-saving treatments they desperately needed.
Mentioned on this episode:
Quotes:
"I had to go public. I made the decision to use my voice and advocate for myself and my family, but all the other people weren't going in the same thing." ~ Isabel
"I think that's such an incredible story. It's you know, hopefully, it inspires other people to know that their voices can be heard. They don't need to be scared and our system although flawed as it is, and as frustrating as it can be, does work at times." ~ Jason
The National MPS Society exists to cure, support, and advocate for MPS and ML.
What is National MPS Society: Our Voices?
We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys.
The National MPS Society exists to cure, support and advocate for MPS and ML.