Patient Stories

Sometimes, when a new challenge is faced, it helps to hear from someone in a similar situation. Many individuals with MPS I disease have learned from experience about managing the emotional issues raised by the disease. In this section, you can listen to interviews with some of these patients and their families, and learn how they have coped.

Haley’s Story

Haley is nine months old. Her parents learned a month ago that Haley has a severe form of MPS I (historically known as Hurler disease). Watch Haley’s story to learn how Haley was diagnosed, how her parents are coping, and their plans for Haley’s future treatment.

Watch Haley’s Story

Bryce’s Story

Bryce has just turned six. Two years ago, he was diagnosed with an attenuated (less severe) form of MPS I. Watch Bryce’s story to see how Bryce and his parents are coping with the diagnosis, the experience Bryce has had with treatment, and how the whole family works together to support each other.

Watch Bryce’s Story

Alicia’s Story

Alicia is a 16-year-old with MPS I. She has known about her diagnosis of MPS I for nearly 10 years now. She has an attenuated form of MPS I. Watch Alicia’s story for interviews with Alicia and her mother on how she was diagnosed, what life with MPS I is like for Alicia and her family, and how she dealt successfully with being bullied in school by educating her peers.

Watch Alicia’s Story

Denise’s Story

Denise is a 40-year-old woman with MPS I. She was first diagnosed at the age of 10, but it wasn’t until her early 30s that she began to experience many of the symptoms that she is living with today.

Watch Denise’s Story

Credit

Video clips courtesey of GeneticaLens.