Evolving Needs, Evolving Care, Evolving Diagnosis – by Bethany Weddle

Childhood: Early Awareness and Planning.  From the moment I was born, my parents knew my Turner syndrome(TS) diagnosis would mean lifelong monitoring -  that my needs would evolve as I grew. They were right. What no one fully explained was how much those needs would change, or how deeply each stage of life would reshape my understanding of myself.

As a child, care revolved around growth and heart health. My parents coordinated appointments, tracked milestones, and balanced a desire for normalcy. Something as simple as attending a summer camp or a sleepover took planning - making sure my medication was packed and timed properly, and checking that adults understood what I needed. While my peers just grabbed a sleeping bag and went, independence for me always came with logistics.

Adolescence: Navigating Change.  Hormone therapy began in adolescence, bringing a swirl of emotions, social comparisons, and medical questions most of my friends never had to consider. My parents and I were still learning together - what was “normal” puberty versus Turner-related, what symptoms to watch, and how to prepare for future conversations about fertility and family.

Young Adulthood: Asking the Hard Questions.  Approaching marriage, I faced difficult, emotional questions about reproductive health and family planning. I’m grateful for the doctors who were willing to have honest discussions, even when the answers were complex or painful. These experiences taught me early that advocacy isn’t just about pushing for a diagnosis - it’s about giving yourself permission to ask hard questions and face whatever truths come next.

Adulthood: Evolving Health and Understanding. In recent years, I noticed symptoms that didn’t fit neatly into any familiar box - fatigue, hair loss, rashes, and unexplained weight changes. Routine lab work didn’t offer clear answers, but I kept pressing. Eventually, I was diagnosed with a rare immune deficiency that often appears in adulthood. Treatment brought relief and clarity - proof that our health isn’t static, even when our diagnosis remains the same.

Discovering Patterns in Myself. Through all of this, I began noticing lifelong patterns - emotional regulation, sensory sensitivity, and executive functioning - especially through parenting my autistic child. Exploring these patterns in myself led to a diagnosis of Level 1 autism at 35. This clarity helped me make sense of experiences that had previously felt confusing or unexplained. Important Context: Like many of my diagnoses, autism may not be directly linked to Turner syndrome, but research shows that traits such as challenges in social communication, executive functioning, and visual-spatial reasoning are more commonly observed in the TS community. Understanding these traits has helped me better understand myself and navigate my evolving needs.

Reflection: Growth Through Self-Acceptance and Advocacy. Through each season - childhood camps, teenage milestones, marriage conversations, motherhood, and now mid-adulthood - my care and self-awareness have transformed. Turner syndrome has been a thread through it all, but how it interacts with my body, mind, and emotions continues to shift.

What I’ve learned is that evolution doesn’t mean instability - it means growth. It means listening closely, asking questions, and adapting as life changes. Most importantly, it means cultivating self-acceptance and the ability to advocate for your own needs — skills essential for navigating the ever-changing landscape of health, emotions, and life circumstances. My health, my needs, and my understanding of who I am will keep evolving - and that’s okay. For those of us with Turner syndrome, this evolution is part of the story. It’s not a sign of weakness but rather, of resilience - proof that we are continually learning how to care for ourselves in deeper, wiser ways.