Finding untreated and under-treated patients

“Looking back, I was probably struggling with my breathing for at least three years before I was finally diagnosed with COPD. And even then, it seemed to take ages to get a straight answer. Finally, after pushing and pushing, in February 2021, a respiratory nurse gave me a very offhand diagnosis over the phone.”

“I went back and asked the GP why this wasn’t picked up before, as I had been presenting with high blood pressure. Ten years prior my kidney function was at 97% and then it dropped to 60 then it dropped again. It had just been overlooked.”

“Finally, I came across the concept of cachexia. Sadly, this was only after he died. No one in the medical world had mentioned it, and it suddenly made sense to all of us who had cared for my husband as to why we had faced this struggle. Knowing about this created a huge relief for our kids, who had been so worried that we had failed my husband by not feeding him enough.”

“A CT was never considered and because I had no prior knowledge of lung cancer, I never knew to ask… in total it took five months to confirm my lung cancer diagnosis in which time it had developed from stage 1 to stage 3.”

“I’d also been to the doctor’s a couple of times with stomach pain in the year or so before the diagnosis, but this was put down to fibromyalgia… I was referred for an ultrasound, and it took weeks because I hadn’t been referred along the cancer pathway”

“It took more than a year before I was diagnosed with Crohn’s disease, and another 10 before I received the medical treatment I needed in order to live a full life. I am still coming to terms with the fact that I suffered unnecessarily for years.”

“My PBC journey was more like a scavenger hunt… Even though my primary care physician found elevated liver enzymes in my blood work, they didn’t connect that to my fatigue…”

“My brother was undiagnosed with lupus for 3 years despite showing signs. Ultimately when he was diagnosed, we were told his outlook was not good.”