When you’re living with a chronic condition, having a community you can turn to for support can make all the difference. When that condition is rare, like type 1 Gaucher disease, getting support and advice from others who have been there can be even more important. No one understands this better than Jade and Talya, both of whom live with Gaucher.
There have been times when no one else knew what I was going through outside of my family, which made it difficult. Now I have more of a support community in place. That’s made it much easier.
Finding that community has sometimes required a bit of effort, but it has proven to be incredibly helpful. Over the years, Jade and Talya have been able to get the support they need. In return, they are paying that generosity forward.
Jade learned the importance of community early on. When Jade was young, her mother realized that there weren’t a lot of support resources for people living with Gaucher. So she found other kinds of support groups with children Jade’s age to help foster that sense of community. Although the groups didn’t have any kids living with Gaucher, they welcomed Jade and gave her an opportunity to interact with others facing some of the same challenges.
My mom really went above and beyond trying to find me those resources, even though at the time there weren’t many. She got me into support groups, even though they were for children with other illnesses, and they made space for me.
As she grew older, the types of support Jade needed changed. Her healthcare team has always been there for medical and treatment support whenever she needed it. However, there were times when Jade wanted advice from others who were going through—or had gone through—similar situations.
Sometimes, Jade has found that support and community at in-person events. At one such event sponsored by the pharmaceutical company that provides her medication, she was able to connect with others who had experienced a similar challenge to one she was dealing with. It helped to talk with people who could understand her experience.
I met other women my age and found out that we were having similar experiences with type 1 Gaucher disease. Hearing from these women helped me feel like I wasn’t alone.
Connecting through social media
Social media has made it possible for people living with Gaucher to connect with each other like never before. It’s become a great tool for creating a community. People from all over the world can share experiences or offer helpful advice and tips. For Talya, it’s been an ongoing source of information and support.
People will ask and answer questions, as well as post about the things they’ve gone through that can encourage, inspire, and help others who may be going through something similar.
Through online support groups, Talya has been able to get motivation and advice on topics ranging from finding the right nurse to changing jobs.
For Talya, online discussion groups have also been a great way to give back to the community. One time, she connected with a mother of a young girl living with Gaucher. The mother asked Talya if she would talk with her daughter and share her knowledge and experiences of living with Gaucher.
It’s all about the knowledge that you have. There aren’t many of us that we could talk to. So to have anyone that has a similar experience is comforting.
Talya remembered what it felt like to be in the girl’s shoes. She saw this as an opportunity to not only share her experience, but to mentor someone who was still learning to navigate her condition.
Finding your network
Support can come from many places: friends and family, local events, or even someone on the other side of the globe. Whether in person or online, there are people who want to help.
Finding a community might take some time, but when you do find the right one for you, it can be a source of inspiration and encouragement.
“For every difficult thing about Gaucher, there's also positive stories of people going above and beyond and making living with Gaucher easier to deal with and manage.”
Tagged in: Community, Support Networks, Building, Listening