Kaposi’s Sarcoma: Just want to talk

Posted by sagan7 @sagan7, Aug 8 11:40pm

I’m a 43 year old man who has been living with Kaposi’s Sarcoma for the past 10 years. I don’t have HIV and developed the disease for unknown reasons. The worst part of this disease is its rarity. In this whole time, I’ve never met another human being with this awful disease despite desperately searching online for even one single soul. Is there anyone out there who has this, who is going through the same pain and challenges? After all this time, I still hold out hope that someday I’ll make that contact.

Interested in more discussions like this? Go to the Sarcoma Support Group.

Colleen Young, Connect Director | @colleenyoung | Aug 9 11:10am

Welcome @sagan7. I moved your discussion about living with Kaposi’s Sarcoma to the Sarcoma support group here: https://connect.mayoclinic.org/group/sarcoma/

I'm also tagging fellow Kaposi members like @bigredd566 @zaptor88 @kaposi @jrs2024 @ggarca @leroy23, who may wish to share their experiences and answer some of your questions.

@sagan7. can you help get the conversation started? What challenges are you facing living with Karposi?