Hi everyone, my name is Ciuss — but you can call me Cy (Sigh)!
I currently work at Wise Owl Animal Hospital, where I get to care for the animals I’ve always loved. At home, I have my own furry babies, and in my free time I enjoy cosplaying, playing video games, and spending time with the people I love.
Earlier this year, in April, my life took an unexpected turn. I was diagnosed with Ocular Myasthenia Gravis, a rare autoimmune neuromuscular condition. Since then, my condition has progressed to Generalized Myasthenia Gravis (gMG), which now affects multiple parts of my body and impacts my daily life in ways I never imagined.
My symptoms began with drooping eyelids, facial numbness, and muscle twitching whenever I tried to smile. Even though my initial bloodwork showed no abnormalities, my doctor tried me on Mestinon — and when it brought quick relief, we finally had an answer.
But as the months passed, things worsened. My ptosis became more constant. My legs weakened, especially when walking down stairs. Some days, simple tasks felt exhausting. My arms and legs trembled from just standing or holding myself upright. Swallowing became uncomfortable, and fatigue became something I battled every single day.
We tried increasing my Mestinon dosage, but the side effects were severe — painful muscle cramps, diarrhea, and overall discomfort. My doctor then started me on Prednisone, a steroid that brought significant relief and gave me hope. I began tapering down, especially after a CT scan showed no issues with my thymus.
Unfortunately, when we lowered the steroid dose, the symptoms returned. I had to go back to the full dosage, which isn’t safe long-term due to risks like osteoporosis, hair loss, and muscle deterioration. Because of this, my doctor strongly recommended a thymectomy — surgery to remove the thymus, which could greatly improve my quality of life and reduce my need for heavy medication.
I recently sent my medical records and CT scans to St. Luke’s Medical Center in the Philippines, where I received an estimate for the surgery, including pre-op tests, the thymectomy itself, and post-op care. However, the doctors also discovered I have an Aberrant Right Subclavian Artery, a rare vascular condition that may require a second procedure called TEVAR (Thoracic Endovascular Aortic Repair).
The total estimated cost for both surgeries is ₱5,316,388.80 PHP, which is about $91,000 USD.
I’m currently waiting for a cardiology referral to secure an off-island referral for the second surgery, and I’m also waiting to hear back from my insurance provider about what costs they may be able to cover.
As for how I’m doing now — I want to be honest with those supporting me. My drooping eyelids happen more frequently. My hands tremble even while eating or using my phone. Some days, walking or standing feels extremely difficult. Swallowing can be uncomfortable, and even talking or chewing makes my jaw tired. Fatigue is a daily struggle. I’ve reached a point where getting up from a squat is extremely difficult. Sometimes my legs don’t have the strength or energy to push me back up, and I either need assistance or end up falling. Still, I do have good days — days where I feel like myself again, even if only for a little while.
One of the most uplifting parts of this journey has been meeting others with Myasthenia Gravis and autoimmune conditions. Their stories, encouragement, and kindness have given me strength when I needed it most. They’ve reminded me that I’m not alone — and I’m truly grateful for that sense of community.
Thank you, from the bottom of my heart, for your prayers, donations, shares, and support. Every single gesture brings me one step closer to receiving the surgery I need and reclaiming my quality of life. I’ll keep you all updated every step of the way.
With love and gratitude,
Cy
Know more about my sickness:
Organizer
