Living With Turner Syndrome: My Journey

I live with Turner Syndrome, and I'm sharing my story to help others understand what this diagnosis really means for the 1 in 2,000 girls affected worldwide.

The Reality of Living with Turner Syndrome

Turner Syndrome isn't just one challenge—it's a constellation of medical needs that require lifelong care, vigilance, and adaptation.

Progressive Hearing Loss

Up to 90% of us with Turner Syndrome experience hearing loss, and I'm one of them. I currently rely on hearing aids to communicate, work, and connect with the people I love. But my hearing continues to decline. Eventually , I'll need cochlear implant surgery—a life-changing procedure that will cost between £50,000 and £100,000. Hearing isn't just about sound; it's about connection, independence, and being able to fully participate in life.

Cardiovascular Complications

I have a dilated artery, one of the serious cardiovascular issues that can develop with Turner Syndrome. This means regular monitoring with specialized imaging and ongoing cardiac care. Keeping my heart healthy isn't optional—it's essential to my survival and quality of life.

Kidney Health

Like about one-third of people with Turner Syndrome, I have kidney abnormalities that require continuous specialist monitoring and care.

Hormonal Management

Turner Syndrome disrupts hormone production, which affects everything from growth to development to daily wellbeing. I take medication every single day and see my endocrinologist regularly to manage these challenges.

Future Fertility

Like most women with Turner Syndrome, I face fertility challenges that will require specialist treatments when I'm ready to build a family.

Lifelong Monitoring

Beyond these major concerns, I need continuous bone health monitoring and management of other complications that emerge throughout life with TS.

The Financial Reality

These aren't just medical challenges—they represent a significant financial burden. Annual costs for managing Turner Syndrome can easily reach £20,000 or more, with many of us experiencing costs exceeding £50,000 per year as we transition into adulthood and require more intensive care.

I've established a medical fund to support my future healthcare needs. This fund represents my commitment to managing my health independently and maintaining the quality of life I've worked hard to achieve. It will cover:

Cochlear implant surgery (£50,000 - £100,000)

Ongoing cardiac monitoring and care

Kidney specialist appointments and monitoring

Regular endocrinologist visits

Daily medications

Future fertility treatments

Other medical needs as they arise

Why I'm Asking for Support

I've never been someone who asks for help easily, but Turner Syndrome has taught me that we're stronger together. Every contribution, no matter the size, helps me maintain my independence and access the healthcare I need—not just to survive, but to thrive.

Your support means I can focus on living my life fully while managing this condition with confidence and hope.

Beyond My Story: TSandMe

While building my medical fund, I'm also building something bigger. Through my platform TSandMe, I'm creating content, writing blogs, building community, and supporting other TS warriors directly. This work matters to me because I know how isolating this diagnosis can feel, and I want others to know they're not alone.

If you'd like to learn more about Turner Syndrome or connect with our community, visit https://tsandme.com/

Moving Forward

Living with Turner Syndrome means facing uncertainty, but it also means resilience, strength, and finding joy despite the challenges. I'm not just managing this condition—I'm building a life I'm proud of.

Thank you for taking the time to read my story, and thank you for any support you can offer.

Together, we're not just surviving—we're thriving.

Teisha.