Welcome to My Life With Gaucher, a place where you can read stories from people living with type 1 Gaucher disease. Get inspired, be moved, and come back often for more.
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.
HELPFUL ADVICE
from a Takeda Patient Advocacy Professional
Tips on How to Communicate With Your Healthcare Team
6 min read
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
JADE & TALYA,
living with type 1 Gaucher disease
Building Your Community
4 min read
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 THEIR STORYMORE FROM ANNEMARIE, JADE & TALYA
Standing Up Without Fear of Standing Out
10 min read
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.
Teaching Others About Gaucher
3 min read
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.
Jade,
living with type 1 Gaucher disease
My Journey to 3 Healthy Habits
9 min read
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 JADE’S STORYMORE FROM JADE
Choosing Health Insurance That Fits Me
4 min read
Jade found out that speaking her health insurance’s language goes a long way. Find out why.
What I Look for in a Nurse
3 min read
Nurses may come and go, but the right ones for Jade have made a big difference in her life. Find out how.
Talya,
living with type 1 Gaucher disease
Seeing the World While Watching My Health
9 min read
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 TALYA’S STORYMORE FROM TALYA
The Queen of Carefully Organized Care
2 min read
Staying organized is an extra challenge for Talya, but she has learned how to stay ahead of the game. Take a look!
The Value of Speaking Up
2 min read
Talya has decades of experience getting infusions and isn’t afraid to speak up when needed. Learn more.
More inspiration IS on the way
Visit us often to find new resources and stories we hope you’ll find useful and inspiring.
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