Juvenile Polyposis Syndrome

I just lost a friend who thinks I’m overreacting to being diagnosed with the SMAD4 gene mutation that causes my hht and jps ...she hasn’t exactly been there for me since I got diagnosed and never talked to me to see how I’m handling it. She doesn’t understand it and never will but yet I’m the bad guy for being distant when I’m just dealing with all of it in my way. I still work a lot might I add and still am social on occasions. I have my good days and my bad days and she thinks I’m being overdramatic when I can’t get out of bed and don’t want to do anything. I’m just tired of everyone telling me how I’m supposed to feel and then saying, “oh it’s not that bad!” #JuvenilePolyposisSyndrome #HereditaryHemorrhagicTelangiectesia #Smad4gene #ChronicIllness

I have been searching for other people that have my disease it’s called Juvenile polypous syndrome or JPS. Me, my sister, my brother, my father, and my 2 young daughters have it. I would really love to find other people that have #JuvenilePolyposisSyndrome . It would be nice to see what other people have gone through. Thank you.