Lupus.net Celebrates 1 Year

It is hard to believe that just 1 year ago, we launched Lupus.net. Happy anniversary to our community members!

Lupus.net was created to cultivate a community for people living with and affected by lupus. Whether it has been on Lupus.net, our Facebook, Twitter, or Instagram, we have been excited to share information, connect with those living with lupus, and offer a place for everyone to share personal thoughts and experiences. We have learned so much from you and hope you have found some lasting connections as we continue to grow.

In celebration, we thought it would only be right to highlight those who have chosen to share their stories. Each of us has own our unique journey, and we are so grateful for those of you who have chosen to share yours on Lupus.net.

Lupus.net Advocates

We would not be here without you

Our advocates come to us from across the United States and beyond, and from various backgrounds. Some of them are trying to juggle the demands of parenting or sharing their rough journey to parenthood despite their condition. Some of our advocates have been on this journey for 30 years, while others are brand new to life with lupus. You have shown us that representation matters, that finding a trustworthy healthcare team is critical to overcoming the odds, and that self-love is the best love. No matter what the rest of the world says, Lupus.net is here to support you, validate you, and connect you with our advocates who truly "get it."

Stories and how to share

The first but not the last

One day after we launched Lupus.net, our first story submission came from Vanessa. She shares in The Battle of a Lifetime,

"I’m praying that everyone that’s suffering from this debilitating invisible condition gets the help they need!"

Although we have highlighted just 1 story here, we have had more than 18 individual stories shared by community members over the past year. Be sure to visit our stories page to see what others have shared. We know not everyone is ready to share and some may be concerned about privacy, so we also created this guide on how to submit your story and participate anonymously.

Forums and how to participate

You might be asking, "But how do I talk to real people living with lupus?" Our forums section is a great place to connect with others, whether they have lupus or are caring for a loved one with lupus. It is an easy way to ask questions like, “Is this normal?” and hear directly from those who have been through it. It is also a nice alternative to Facebook if that is not your thing!

Dive deeper into a conversation geared around a specific topic. For example, this forum is a place to discuss general topics about lupus, while this one focuses on caregivers. If you are concerned about privacy, it is easy to stay anonymous on Lupus.net by choosing a username that does not reveal any personal information.

We are so excited to see what this next year has in store for Lupus.net! Let us know in the comments how you have benefitted from the community and what you would like to see on Lupus.net in the future!