GSD awareness week 2023
I was asked if I wanted to be involved in Glycogen Storage Disease awareness week this year. Initially I said yes. Transplants within the population of GSD patients are relatively rare and there’s so much stigma around them, and I remember when I was being evaluated for transplant I just wanted one person who’d had a positive transplant experience with GSD to share their story (I did find my people, by the way. We’re just the footnotes in every story). After a while of sitting with this, going back and forth, I decided I didn’t want to be part of this awareness week.
Being transplanted for glycogen storage disease has felt like, for me, being between 2 places. I’m no longer deeply connected to the GSD community. Having had a transplant means their daily reality is no longer my reality. And yet sometimes I feel like I don’t fully belong in the transplant community either, with my story being so complicated and multi-faceted. The demographic of the GSD community is changing, with there being fewer adults with the disease than there are parents of newly diagnosed children. And while I’m hopeful for the future, and I hope and pray science keeps evolving and these precious babies have better outcomes than the generations before them, I often feel like I’m looked at as an example. I’m working so hard to make sure these babies’ stories are not my story. I want better for them than I ever got. Do not look at me as an example of what your children can be, look at the work we’re doing to try and create a better future for them. They will be the generation that stands on our backs to get farther than we were ever able to get.
I’ve also become more protective of my own story post transplant. And I realized in thinking about the questions that would be asked of me should I choose to be involved with this project that I still have so much rage in me that isn’t fair to put on those who do just want awareness and education. This disease took everything from me. It took my childhood, my child, and on multiple occasions very nearly took my life. The quality of life I was handed was subpar at best, but at least I was alive, right? Right? Nobody thought about the long term mental and emotional toll this would take on me, and I’m still dealing with the collateral damage. Despite having had a transplant, the effects of this disease are still present in my body. The damage is irreparable. And while I’ve learned to live with it, adapted and created a beautiful life, I shouldn’t have had to.
I think having a transplant gave me access to more anger because for the first time in my life I wasn’t exhausted to the point of insanity, sleep deprived and force fed nutrients. I was finally able to be a person. And when I woke up to the reality of all I’d missed out on, it made me really really sad and really really angry.
I think this disease is unbelievably cruel and I deserved better. We all deserve better.
One of the questions I was going to be asked was about the benefits of having GSD, and initially blinded by my anger I could see none. Nothing will ever make this ok. GSD didn’t make me stronger, I did that all on my own. It didn’t make me more resilient, I did that.
When I pause to think about it, I think about all the opportunities that were afforded me because of my illness. Make a wish trips, friendships made, experiences I wouldn’t have had had I been born healthy. They aren’t an even trade but they are something. The silver lining in a cloudy life.
I have a lot of nuanced feelings regarding this topic. And you should care, there should be more awareness about this condition so we can find a cure and the next generation won’t have to suffer like I did. There’s no unravelling all the complex emotions that exist, the joy from the pain, the desire for a cure from the deep grief that the cure didn’t come in time for me. And if anything, I think that’s what you should know. It all belongs. And that anger becomes the fire we use to do better, and we need to do better.
