There was a rather heated discussion on one of the other most popular leukodystrophy forums. A recently diagnosed father had written in to offer a critique of that page and the leukodystrophy community in general. He had posted to share his child's diagnosis. He was quick to say that those who had reached out to him and his family had been supportive and kind. The issue he had, as a newly diagnosed parent, was that so many of the parents on the site started discussing the children who had died. As the father of a child who could live for decades, the talk of angels and other children who had died was the oppostite of comforting, it was actually traumitizing. Needless to say, there was bit of pile on for this father who had dared to say this. Some people recalled how they had felt silenced and isolated after their loved one's diagnosis. This forum was for their stories of pain and loss. It seems to me that our newly diagnosed families need to be listened to and supported rather than face a tidal wave of our own stories. There is most assuredly a place for our grief and anger and pain, but it may not be in a feed about the newest initiate to this most terrible of clubs. Our community has a generation gap, there are the parents who have lost children, the ones who were told there was nothing to be done. We need to prepare for this new kind of patient family experience.
We all have our stories, but we need to take care not to impose our story on others.
I think it is safe to assume that when a doctor tells you your loved one has a terminal illness, you must have a sort of breakdown until you figure out how to put yourself back together again (Humpty Dumpty style). But, it is important that those of us who have gotten more skilled at learning to manage our pain (it took me about 2 years to figure out how to impersonate a normal person) not assume that everyone else experiences this disease the way we have.
There is still such a powerful narrative in our community about being told "take home your child to watch them die." One doctor confided to me recently that she struggled mightily to get families to understand that no one expects a patient familly to leave the hospital and watch their kid die with some sort of gruesome nightmarish version of hospice. Too often, that's what people hear and even gets reinforced (in our forums) is that you need to go home and watch your loved one die.
This disease is not what it was 10 years ago or even five years ago when Cal was diagnosed, and this is because lots of families and doctors and advocacy groups have been working to change things.
When Cal was diagnosed at CHOP, there were two doctors who treated kids with leukodystrophy, now there are 35 specialists and half a dozen studies at CHOP. Thanks to the work of ALD Connect, Stop ALD, the ULF, and the Aidan Seeger Foundation, ALD is now included on the Recommended Uniform Screening Panel and a growing list of states are screening newborns. In the last year, dozens of children have been identified at birth with ALD, and we are seeing a tidal wave of new patients who will get the chance to monitor and stabilize the disease.
We are now entering a new era. Bluebird bio and GSK are expected to seek EMA and FDA approval for gene therapies in the next few years for their gene replacement therapies. The University of Wisconsin's Dr. Albee Messing has been doing some remarkable work to treat Alexander disease and there are at least two gene therapy studies going on for Canavan disease.
Too often, our forums get hijacked by the old guard telling the old story.
This generation gap means that families who were diagnosed in the era of newborn screening and new treatments will get more happy endings, we can't keep pushing our old narrative on them. We need to make room for hope and the happier endings.
We need to prepare for a different kind of leukodystrophy patient and help them tell their story before we recount our own.