Life With Sticklers

Living with Stickler Syndrome means our joints do not always follow the typical timeline of wear and stability. That is why regular visits with an orthopedist are not just routine, they are essential, and they should begin early in life.

Many individuals with Stickler Syndrome start showing joint wear far sooner than expected, sometimes even in childhood. It is not uncommon to see early signs of joint changes, including juvenile arthritis, joint instability, or differences in alignment at a young age. Children may not always have the words to explain what they are feeling, and what looks like growing pains, clumsiness, or fatigue can sometimes be early indicators that deserve a closer look.

Having an orthopedist involved early creates a baseline. It allows providers to track subtle changes over time rather than reacting only once pain or injury becomes significant. Early monitoring can open the door to supportive care like physical therapy, strengthening plans, activity modifications, bracing, or even mobility support when needed. These small steps can help protect joints, reduce long term damage, and support confidence in movement as children grow!

This is not about searching for “problems”. It is about giving your child every advantage. Early and consistent orthopedic care can play a key role in preserving mobility, managing discomfort, and helping children with Stickler Syndrome stay active and supported throughout each stage of life.

Today was The Marfan Foundation NC Walk Victory, and it was nothing short of incredible. Together, everyone fundraised an amazing $97,003 toward the $100,000 goal for the 2026 North Carolina Walk for Victory, which is such a powerful reflection of this community’s heart and dedication. There were so many people in attendance this year, and it was especially moving to see such a strong presence of virtual walkers showing up from wherever they were!

Team Stickler, representing Stickler Syndrome, had 16 teammates this year, with 13 participating virtually. We know this year has been difficult for so many, and while not everyone could be there in person, the support, encouragement, and awareness shared from afar meant just as much.

Representation and awareness truly matter, especially for Stickler Syndrome. The more people who understand it, the better chance individuals and families have at early diagnosis, which can make a life-changing difference. Early interventions and proper monitoring can help manage complications like vision, hearing, joint, and heart concerns before they become more severe. Increased awareness also helps drive research forward, bringing hope for improved treatments and a deeper understanding of how this condition affects each person differently. Every shared story, every step taken, and every dollar raised helps build that momentum.

We are so hopeful that next year even more people will join our team and continue this mission with us. On a personal note, I was incredibly surprised and honored to receive the Most Spirited award, which felt especially uplifting after such a challenging year. “Most spirited” is one of those awards that isn’t about skill or performance; it’s about energy and presence. If it’s being given to you, it usually means people see you as someone who lifts others up and brings something extra to the environment. Moments like that remind me why this community means so much. I also had the chance to meet a few new families and individuals with Stickler’s, and those connections are truly priceless. Today was a beautiful reminder that none of us are walking this journey alone.

Also, Today April 25th is National DNA Day, a day that highlights the power of genetics in shaping our health and understanding our bodies. For families affected by conditions like Stickler Syndrome, it’s a reminder of how important genetic research, early diagnosis, and awareness truly are. Every step forward in science brings more answers, better care, and hope for the future!

Chronic pain can be exhausting —physically and mentally. That's why we're offering this free, virtual Empowered Relief® session, developed at Stanford University, you’ll gain simple, science-backed strategies to help you feel more in control.

Register here: https://marfan.org/calendar/empowered-pain-relief-course/

In this 2.5-hour webinar on May 6, attendees will explore:
• Mindfulness techniques
• Relaxation methods
• Ways to shift how you respond to pain

You don’t have to figure this out alone.
Save your spot today 💜❤️💙💚

April is National Donate Life Month, and for me it carries a very personal meaning.

When people think about donation, they often think about organ donation. What many people do not realize is that tissue donation is just as important and life changing for so many people. Donated tissue can help rebuild joints and ligaments like mine, restore sight through cornea transplants, help burn victims heal through skin grafts, repair heart valves in children, and even help surgeons rebuild bone after traumatic injuries or cancer.

In the same year, I had two separate knee surgeries, each repaired with cadaver donor tissue from two different individuals. That means that somewhere, two families experienced unimaginable loss, and in the middle of their grief they chose to say yes to donation.

Because of them, I was given healing my body desperately needed. Their loved ones’ gifts became part of my story and part of my body in a way that words will never fully capture.

I will never know their names, but I carry their gifts with me every single day. Two lives were lost, yet through their families’ compassion, pieces of those lives continue helping others.

Donation is one of the most selfless acts imaginable. In the midst of heartbreak, two families chose generosity, and because of that their loved ones’ legacy lives on in people like me.

If you have ever thought about becoming a donor, please know your decision can change someone’s life in ways you may never see, but that they will feel every day for the rest of their life.

To the two donors and the families who made that brave decision, thank you. Your loved ones’ gifts will always be honored and remembered. 🩵💚