Alagille Syndrome & Other Chronic Illness
Living with Alagille Syndrome means living with a condition that affects multiple organs and systems in the body. For me, it’s the liver, heart, bones, eyes, ears, and more. I had a liver transplant at age 13, and I continue to manage the effects of this rare genetic disorder, including lifelong medication, pathology tests, specialist appointments and at times limited energy or fatigue.
But Alagille Syndrome isn’t just the only diagnosis I live with. I also have Avascular Necrosis in both my hips and knees, which cause joint pain and this scraping sensation on my knees (I had a right hip replacement surgery in 2021). On top of that, I live with a Chiari Malformation and syringomyelia, which affects my brain and spine, causing symptoms like pain and pressure (I was diagnosed with Chiari in 2024).
All of these conditions are invisible to most people. But I feel them every day. And there are days when it’s not just my body that’s tired, it’s my spirit and mind too.
SPIRITUAL TREATMENT FOR ALAGILLE SYNDROME & OTHERS
There’s a song called “What A Friend We Have in Jesus,” it’s a reminder that in the midst of physical weakness, emotional overwhelm and mental exhaustion, we have a Friend who understands, listens and carries our burdens.
This song wasn’t written for fame. It was written by a man who had suffered deep grief and used his faith to comfort his mother, and ultimately others who are living with chronic illness, disability or going through a tough time.
Jesus promises His friendship to those who are sick, disabled, isolated. He knows what it’s like to suffer. He didn’t avoid the sick, He walked towards them.
When doctors don’t have answers… when you’re too tired or sick… when the future feels uncertain… go to Jesus.
He doesn’t always take away the pain, physical or emotional, I know for sure that He will meet you in it.
Spiritual health and mental health go hand in hand. And for me, trusting in God, reading the Bible and leaning on worship songs are forms of treatment too, spiritual treatment for a life that needs healing in every dimension.
What Does the Bible Say About Chronic Illness & Disability?
The Bible doesn’t avoid the topic of sickness or disability. In fact, Jesus spent much of His time healing, listening to, and reassuring the sick and disabled.
He didn’t shame the sick. He touched them.
He didn’t avoid the disabled. He called them by name.
He didn’t blame suffering. He brought purpose through it.
When we ask “what does God say about disability and chronic illness?”, we see throughout Scripture that God is near to the brokenhearted (Psalm 34:18), and His power is made perfect in our weakness (2 Corinthians 12:9).
If you’’re sick, overwhelmed or discouraged, know that Jesus sees you. Your condition doesn’t disqualify you from hope. Your physical or mental pain doesn’t cancel your purpose.
Whether you’re facing chronic illness, disability or just going through a tough time, you are not alone. You have a Friend in Jesus. And His strength can carry what your body and heart no longer can.
Your suffering matters. And healing isn’t just physical, it’s spiritual too.
Jesus loves you.