MY LIFE WITH GAUCHER
HEAR FROM REAL GAUCHER PATIENTS
This site is intended for US audiences
Explore this page to read stories and advice from people living with type 1 Gaucher disease.
Keep in mind that type 1 Gaucher disease affects everyone differently. These stories do not reflect all the possible experiences that someone may have with this condition. Also remember that your healthcare team will always be your best source of information.
Knowing how to voice your or your child’s needs can help everyone on your healthcare team work better, together.
Find tips on how to work well as a team. Read more.
Living with type 1 Gaucher disease
Jade and Talya know how important support can be for people living with type 1 Gaucher disease.
Find out how they’ve built a network with others in the community. Read more.
Annemarie, Jade, and Talya have learned to stand up for themselves in different aspects of life with type 1 Gaucher disease. They don’t hesitate to speak up, and ask for support when they need it. Read more.
Annemarie’s goals have kept her on the go, moving from state to state. Through all her travels, she’s learned one clear lesson.
Read more to find out what it is.
Living with type 1 Gaucher disease
Jade’s challenges with Gaucher disease set her on a path of self-discovery.
See what she learned about herself and the healthy habits she gained along the way. Read more.
Jade found out that speaking her health insurance’s language goes a long way.
Find out why.
Nurses may come and go, but the right ones for Jade have made a big difference in her life.
Find out how.
Living with type 1 Gaucher disease
Talya’s goal is to visit 30 countries by the time she’s 30. The challenges with Gaucher disease don’t make it easy, but her determination has yet to meet its match. Read more.
Staying organized is an extra challenge for Talya, but she has learned how to stay ahead of the game.
Take a look!
Talya has decades of experience getting infusions and isn’t afraid to speak up when needed.
Learn more.
