This week we’re featuring three Patient Leaders in the Gaucher’s Disease community. Never heard of Gaucher’s? That’s not surprising considering it affects between 1 in 50,000 and 1 in 100,000 people. Less than 1 percent of the population in the U.S. are carriers for type 1 Gaucher’s disease, which is pronounced “go-shays.” Considering how rare Gaucher’s can be, we’re all very fortunate to have these very strong Patient Leaders in this space!
Have a great weekend, everyone!
Gaucher’s Patient Leader
“Why I share my story: “I share my story and advocate for rare disease awareness, specifically Gaucher disease, because I want everyone effected by it to know that they’re not alone. GD has different levels of severity and impacts all types of people all over the world, not just those in the Ashkenazi Jewish population, which is often mentioned. I want more people to be aware of Gaucher Disease so that there will be a better understanding of what it is and who it effects; thus, more research can be done to create not only more, but better treatment options for those impacted by it.”
Gaucher’s Patient Leader
“I was diagnosed with Gaucher’s Type 1 when I was about 6 years old. While scheduling a liver biopsy, we discovered I also have Hemophilia Type A. The biopsy was abruptly canceled. I grew up not being able to play sports, participate in gym class, and basically live in a bubble wrap suit. I am the only person in my family that has Gaucher’s Disease, and now the only person who has Hemophilia. My uncle had severe Hemophilia, but passed away from AIDS in 1998 that he got through a tainted blood transfusion. Even as an adult, it is very lonely being the only person in my entire family with these illnesses. I try to spread awareness of the disease so people learn about it and so we can discover more treatments and hopefully a cure. I also feel it is very important for my family to learn about Gaucher’s since they have the high possibility of passing it along to their children, even as a carrier. I don’t let the disease define me anymore. I define my own life. Some days it takes over, and I have to fight the fatigue, pain, and depression that all come with the disease, but building a community of Gaucher’s patients helps us all cope and get through this together.”
Do you know amazing Gaucher’s Patient Leaders?
Gaucher’s Patient Leaders Needed
We’re always on the hunt for fantastic Patient Leaders to invite to our network. If you know anyone advocating in the Gaucher’s community, send them to http://profiles.wegohealth.com to create a WEGO Health account and get updates on all of the upcoming work we have!
If you’re feeling inspired by these top Patient Leaders, you should join our network!
When you join our Patient Leader Network you’re first to know about the new and exciting things we’re doing at WEGO Health. Not only will we reach out to you when we have paid opportunities in your condition area, but we’ll also connect you with other Patient Leaders so you can share ideas and help each other amplify your messages. What are you waiting for? Join today!
Did you miss our last #FollowFriday? You can catch up here!