“I could’ve lost my life. I think of the doctor who laughed at me. ‘You’re healthy!’ he’d say. I wanted to give up more times than I can count. But I NEVER wanted someone to walk in my shoes.”
‘What if they don’t believe me?’ The surgeons had NO answers. I was labeled a ‘hypochondriac.’: Ehlers-Danlos Syndrome warrior becomes advocate, ‘The frustration fueled a fire in me’
‘PLEASE take her with you. I can’t watch her go through this.’ She vomited and lost weight. We watched helplessly.’: Parents of special needs daughter forced to leave US, ‘We hold on to hope’
“Her medical team was alarmed and upset. ‘You CAN’T leave. She needs to be here. I’ll write to whomever I need to for her to stay.’ We watched as she regressed.”
‘I recorded videos to be played at my funeral. Something was waiting to latch on and rob me of my years.’: Fanconi Anemia patient puts embryo transfer on hold during Covid-19, ‘I want to be around for the rebuilding of this world’
“What if I got ill while pregnant? I love this collection of cells with all my being. I asked my doctor to tell us what to do. ‘The risk is just too high.’ There is sincere heartbreak in this decision.”
‘He woke with a small cough. Within hours, he had trouble breathing. A few hours after that, he took his last breath.’: Woman’s husband who ‘never got sick’ passes suddenly from Bone Marrow Failure months before birth of son
“My husband, Jonas, began to look pale. We both chalked it up to jet lag and went on with the week. We had two small children and I was 14 weeks pregnant with our third, so being tired wasn’t out of the norm. Later that week, even picking up the kids’ toys would make him dizzy. Another week went by, all the while he continued to ride his bicycle over 20 miles a day. He came home that night after riding and had almost passed out while riding. ‘Enough is enough.’ I figured it couldn’t hurt to go to the doctor.”
