It’s time to get connected
By Lauren Metelski
Health Education Nurse Manager for Lupus Foundation of America
One of the cruelest aspects of lupus is the isolation it brings – days when you’re so fatigued you can’t leave the house, people not understanding how sick you really are because you “don’t look sick” and the constant uncertainty it brings to everyday life.
For years, our Health Educators have received feedback from people with lupus about wanting a place where they can connect with others and receive support without having to leave their homes. We’ve been listening.
On August 29, in partnership with Inspire, a leading social network for health support communities, we launched LupusConnect – an online platform where you can engage with others affected by lupus, 24/7 from around the world.
"We’re so excited to share this resource and provide you with a place to foster discussions, build relationships and receive the support that we know you find to be very valuable."
With LupusConnect You're Not Alone
LupusConnect is similar to a social media platform, but focused specifically on your health. We know lupus often makes it difficult to get out of bed let alone leave your house for a support group, but these are the times you need your community the most. LupusConnect offers you a safe place to express your fears, frustrations and hopes with people who know and understand lupus firsthand.
When you join LupusConnect, you can share health information and support without regard to time, location, background or status. You can also personalize your profile (sharing as much or as little as you like), post questions or concerns within specified topics, receive answers and tips from other members, follow posts that interest you, engage in a group discussion or direct message other members – it’s your community!
LupusConnect Is a Moderated Online Community
While I, along with other Lupus Foundation of America Health Educators, will be a part of the community and available to answer questions, it will be run primarily by you – those who are looking to connect with others impacted by lupus. We encourage you and all members of this community to pull from your own experiences and share practical tips for daily living as well as resources that you have found useful.
How to Join LupusConnect
LupusConnect can be accessed at LupusConnect.Inspire.com or through the National Resource Center on Lupus. After registering, you’ll receive a brief tutorial on how to navigate the site and then you’ll be ready to connect! If at any point you have questions or concerns, you can reach out to a community leader to guide you.
We’re so excited to share this resource and provide you with a place to foster discussions, build relationships and receive the support that we know you find to be very valuable.
I hope to see you on LupusConnect soon!