Alagille syndrome (ALGS) is such a rare disease that it can be overwhelming upon diagnosis. Receiving the diagnosis can be hard enough for those who are diagnosed and their caregivers to understand. Still, it’s even harder to make those around you understand the seriousness of the e disease. Even though people mean well a lot, they can’t fully grasp ALGS and what can come with the disease.
After we received my son Jackson’s diagnosis, family and friends seemed to support us. When I spoke to the family about ALGS, the stats of needing a liver transplant seemed low, and being that was our main concern, the family didn’t understand what could come along.
While I appreciate all of the love and care, it was hard to get those near us to understand AGLS and the different things the disease could bring us during the journey. I remember once we received the diagnosis my aunt sent me a message saying that it seemed like a positive diagnosis and we should be able to manage it with proper medicine, nutrition, and specialists. While that is somewhat true and I appreciate her taking the time to research the disease, it’s not that simple. ALGS seems to have a mind of its own and in the case of my son, Jackson, had its own mind that led us to a liver transplant.
Read about HCP resources for ALGS
We left Jackson with my mother-in-law while we took my older daughters on a vacation. I was nervous leaving him because he woke up often at night due to itching. I explained to her that he would wake up because he is itchy and even though he was on medicines they never fully took the itch away. I let her know that I tend to him throughout the night because I would feel too bad and guilty leaving him knowing he was crying. After all, there was something medically wrong, not just needing sleep training.
She made me feel comfortable and I assumed she would take care of him the way I did, but the morning after our first night away she told us how she left him on his own all night and he barely slept and cried a lot. It broke my heart! While that was a horrible experience, I think the more his ALGS progressed and the more he started to show other symptoms of liver disease like xanthomas the more she understood his disease.
Dealing with ALGS can be a very lonely feeling. Sometimes, like in my case of ALGS, the outside looked good. There seemed to be no serious issues and Jackson looked just like another kid his age. That was until the symptoms started appearing and when people started to notice him becoming more yellow, or the xanthomas, or the cuts that we couldn’t hide all over his face. Even then it was hard to get them to understand the emotional and mental toll this disease took on our family every single day.
Even now, post-transplant, I find myself trying to explain the severity of concerns to people of Jackson being immune-compromised, and sometimes it can be frustrating. However, I can only hope to continue to spread any information I know about ALGS to those who are curious so more people can understand and learn about the disease.