I can’t find anyone anywhere on any site that has HES like me. I’ve been so sick since 2017 when I got diagnosed finally. I have so much wrong with me. Two drs on oncology at Strong Memorial cancer center in Rochester NY & a
Dr at Yale New Haven cancer center in New Haven CT both told me no cure.., but can maintain in Steroids. Life expectancy was tops 5.5 yrs. Well I’m really disabled & getting sicker by the day with this rare blood disease but I’m still here and it’s going on 6.5 yrs 🙏🏻🙏🏻🙏🏻. I have no support system of others with my strain of HES. My team of drs believe now it’s best to just try keep me comfortable & address issues as they arise. I’m no longer working or walking well. The steroids keeping me alive have given me their own set of wonderful bad side effects. I’m on a gerbil wheel of sorts of the HES doesn’t get me the steroids will. I try and stay positive but honestly as my organs are being effected by my mutant eosinophils eating me alive I can say I long to to know if there are others with this. I just now have developed ulcerative colitis from my HES. Already suffering from congestive heart failure. I’ve been seriously septic more than 9 times. My body fights but no immune system so I battle chronic UTI & cellulitis. Other infections too from the HES. The long term steroids have given me drug driven type 2 diabetes & I contracted huge pulmonary embolisms in arteries into lungs and a large dvt being right leg…, have been put me on blood thinners for life . Sooo that’s my short version sad story. Anyone else recognize this short abbreviation of HES. I’m 100 disabled now no longer working and now looking at a hospital bed at home. I tell ya I’m fighting but crap I’m not ready to go yey