Living with Antisynthetase at 23

Hi, my name is Tia Rey and I’m 23. Earlier this year, I was diagnosed with a rare and life-changing autoimmune condition called antisynthetase syndrome. It’s affected me in multiple ways — I live with myositis (painful muscle inflammation), interstitial lung disease (ILD), and diastolic dysfunction that impacts my heart. Right now, I’m under rheumatology care and taking methotrexate, prednisone, and other medications to manage the condition. Since March, I’ve been off work on sick leave, and only recently began a phased return. Because of how this illness affects my energy and how stress can trigger flares, I’ve had to step down from my role as an Event Coordinator to a less demanding position in Customer Care — a really difficult but necessary choice for my health. While I’m hugely grateful to the NHS, I often feel like I’m falling through the cracks. Test results can take weeks, communication between departments is slow, and I’ve had to chase appointments and answers on my own. Navigating a rare disease like this is overwhelming, especially when the care feels fragmented. That’s why I’ve been looking into private care — to get faster answers, clearer communication, and more consistent monitoring. I’m not asking for donations, but if you’ve taken the time to read this, it would truly mean the world if you could share my story. My hope is that by raising awareness, I might reach people — especially medical professionals or others with similar experiences — who can offer support, advice, or even just understanding. 

Why I’m Sharing This: 

• Antisynthetase syndrome is rare and often misdiagnosed — many people haven’t even heard of it. 

 • Spreading awareness could help others get diagnosed sooner and feel less alone. 

 • I hope to connect with specialists or patients who understand the condition and can guide me.

• Sharing can be just as powerful as donating — it helps me reach people who may be able to help in ways I can’t even imagine yet. Thank you so much for reading, for caring, and for helping me feel seen in all of this. Even one share could make a real difference.