Yes, Jill is a beautiful woman — but the inside of her body really is a mess. Her red blood cells, after feasting on her bone marrow, self-destruct every four days, unlike ours, which circulate oxygen and energy for 120 days. Jill has PK (pyruvate kinase) Deficiency, a rare, inherited enzyme deficiency that prevents red blood cells from making enough energy to survive. PKD was first identified a year after Jill was born in 1961. It would be sixty years before she finally connected with a support group and real information.
Being a twin defined Jill as a child, but not in the usual way. Her fraternal twin, Joy, was pink, plump, and active. Jill was always sick, yellowish, and lethargic. For her first five years, doctors made things worse — treating her like a typical anemia case instead of recognizing PKD. By ten, she was passing out at the blackboard, during church, while playing with friends. Testing finally diagnosed her disease but came with no treatment plan. At fifteen, doctors began removing organs — spleen, appendix, gallbladder — not realizing the real problem was stored-up iron creating sludge inside her body. Middle school brought a Milwaukee Back brace, metal and plastic from chin to thighs, to correct scoliosis. Convinced she was a freak show, Jill tried to become invisible. Three years later, the brace gone, she’d become a foot taller and a “gorgeous blond in blue jeans” — though she never felt beautiful. She just wanted to survive long enough to escape her tiny hometown and a future already mapped out for her.
Years later, Jill needed that same grit to leave a man she loved — narcissistic, cheating, manipulative. She knew the relationship was unhealthy but was desperate for any kind of love. Ten years of therapy followed.
Jill refused to become a victim. When I asked how she’d found the strength to raise two sons, excel in a demanding career, and build a life despite a debilitating disease, she shook her head and smiled: “I had no choice. I refuse to let this disease define me. I am the one who gets to define me. Nothing or nobody else. Not my looks, nor my struggles with men, nor my blood disease.”
Today, Jill advocates for others with PKD through seminars, podcasts, and work with a pharmaceutical company — determined that no one else has to be the guinea pig she was. PKD is still part of her; when she needs an energy boost, she gets a transfusion.
She’s grateful her physical beauty opened doors, but it took years before she even liked
herself. Today, Jill is surrounded by people who love her — Terry, her life partner who recognized her essence fifty years after they first met, her family, and friends of 35 years. She has found peace in her own skin.
Wise Woman Words
“We may go down a lot of crooked roads, but coming out the other end is so much sweeter.”
— Jill Welle
