My FSHD Journey: From Fear to Hope, World FSHD Day Stories

By Taylor Quigg

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I was diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD) in August 2014 while I was eight weeks pregnant with my second daughter. At the time, my oldest daughter was only one year old. The diagnosis completely rocked my world.

I was scared, lonely, depressed, and ashamed. I felt overwhelmed by the uncertainty of what the future might hold. Instead of talking about it, I hid it. For years, I carried the weight of my diagnosis in silence, doing my best to keep moving forward while pretending everything was okay. I

n 2017, on World FSHD Day, I made a decision that would change my life. For the first time, I shared publicly on social media that I had muscular dystrophy. I shared a little bit about my story, my symptoms, and the shuffle that had become part of my everyday life.

That post was the beginning of my healing.

From that day forward, I slowly began sharing more. I started allowing people to see the real and raw side of living with FSHD. It wasn’t easy, and there are still aspects of this disease that I struggle with today. But through sharing my story, I found acceptance. I realized that hiding my diagnosis was hurting me far more than it was protecting me.

As I came to terms with FSHD, I knew I could no longer stay silent. I had two beautiful daughters, and I knew I needed to fight like hell for them. I made a promise that I would do everything in my power to ensure FSHD would not define the future of our family. I would advocate, raise awareness, pray, and do whatever I could to help find treatments and ultimately a cure.

Through every stage of this journey, my faith has been the one constant that carried me. When I was first diagnosed and overwhelmed with fear, faith gave me the strength to take the next step. During the years I kept my diagnosis hidden, it was faith that reminded me I wasn’t alone. When the uncertainty felt too heavy, I leaned into prayer and trusted that God was writing a story I couldn’t yet understand.

There were many moments when I questioned why this was happening and what my future would look like. But even in my darkest seasons, God never left me. He carried me through the fear, the grief, the loneliness, and the waiting. Looking back now, I can see His hand in every chapter of this journey. From finding the courage to share my story publicly, to connecting with others in the FSHD community, to receiving the call that I had been accepted into the clinical trial, every step has felt like an answered prayer.

My faith didn’t take away the diagnosis, but it changed how I carried it. It gave me hope when I couldn’t see a way forward and reminded me that my story was about more than FSHD. It was about perseverance, purpose, and trusting God even when the path ahead was uncertain.

Years later, I’m still fighting and still showing up every day. Some days I can do it all. Other days, simply getting out of bed is my victory. But no matter what the day looks like, I keep showing up.

In February 2025, during my annual neurology appointment, my doctor mentioned a promising clinical trial taking place at the very hospital where I receive my care. He believed I would be a good candidate and added my name to the list. It felt like the beginning of an answered prayer.

For months, I called to check in. I wanted to know if enrollment had opened and whether there was a chance I could participate. Then, in August 2025, I got the call I had been waiting years to receive. I was invited to come in for screening. My husband and I spent the entire day at the hospital completing blood work, physical testing, paperwork, and questionnaires. Then came the waiting. Those next few weeks felt like the longest of my life.

In late August, I received the email that changed everything. I met the criteria and had been accepted into Phase 3 of the Avidity FORWARD clinical trial. The tears started immediately. I had prayed for this moment for years, and now it was happening.

Next week, I will receive my eighth infusion. Time has flown by. While I don’t know whether I am receiving the investigational treatment or the placebo, the experience has given me something I haven’t felt in a very long time: hope.

Hope for treatments.

Hope for a cure.

Hope for future generations.

The mind is a powerful place. For a long time, I allowed my diagnosis to control my thoughts and shape my future. Today, I understand that FSHD is part of my story, but it does not define it. This journey has been the hardest thing I have ever had to walk through. It has tested me in ways I never imagined. But it has also become my greatest testimony.

My story is no longer about fear. It’s about resilience, faith, advocacy, and hope. FSHD may be part of my story, but it is not the author of it. Through every challenge, God has remained faithful. What once felt like the end of my world has become a testimony of resilience, hope, and the power of faith.

And as long as there is breath in my lungs, I will continue fighting, for myself, for my daughters, for my father, and for every person and family affected by FSHD.

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World FSHD Day is celebrated every year on June 20th to raise awareness for facioscapulohumeral muscular dystrophy and unite our community. This year we are honoring the day by sharing the stories of those living with FSHD. 🧡

To hear more stories and perspectives, log into social media and search these hashtags and, if you feel inspired, share your story too.

#WorldFSHDDay #VoicesofFSHD #FacesofFSHD #FSHD #FSHDAwareness