Antisynthetase Syndrome 10 years In

Here's what I've learned from living with the rare autoimmune disease anitisynthetase syndrome for more than a decade   / theannetteleonard   or my website https://www.annetteleonard.com A sobering yet grateful milestone: a decade since I was listed for a double lung transplant. In this snapshot of living with Anti-Synthetase Syndrome ten years on, I’m sharing the realities of this complex journey—from the early loss of my hand function to the challenges of pulmonary fibrosis and navigating rare disease treatments. While the path is often unpredictable and exhausting, I’m rolling with factory parts and finding a quality of life I once thought impossible. If you or someone you love is navigating this terrible cluster of autoimmune challenges, please know you are not alone. It is worth advocating for yourself, seeking the best care, and reaching out for connection. In this video, we discuss: The early symptoms of hand swelling and muscle weakness. The reality of being listed for a lung transplant 10 years ago. Navigating treatments when your disease is the "rare" one in the clinic. The power of self-advocacy and finding specialized care. Let's Connect: If you have questions about what has worked for me or want to share your own journey, please comment below. I read my comments and love hearing from you. You can also visit my website to book a time to talk. Until we’re together again, I am so grateful for you. Be well. #ChronicWellness #AntiSynthetaseSyndrome #RareDisease #AutoimmuneDisease #LungTransplant #PatientAdvocacy #PulmonaryFibrosis This is the Chronic Wellness Podcast. I'm Annette Leonard, podcaster, speaker, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness. Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.