Living with Duchenne muscular dystrophy feels like a gamble
We accept risk because it's better than doing nothing at all
I don’t gamble. I don’t know how to do it. I wouldn’t even know how to place a bet, and the only gambling game I recognize by name is poker.
However, for someone who’s never gambled, I sure understand what it must feel like. How? Because I’m the caregiver of three young men living with Duchenne muscular dystrophy (DMD): Max, 19; Rowen, 16; and Charlie, 14.
When my sons were diagnosed with DMD in 2010, I couldn’t even pronounce the name of the disease. Since then, I’ve become an expert in the devastating, muscle-wasting disease that’s working its way through my sons’ bodies. I learned the facts, studied the science behind new therapies, enrolled my sons in clinical trials, and tried to stay ahead of the disease.
I’ve also learned that although we do everything possible to save our sons from Duchenne, there’s no guarantee it’ll work, because there is no cure.
Regardless of what Max, Rowen, Charlie, my husband, Jason, and I decide to do, we have no guarantee of success. If we choose a clinical trial, we’re trying an experimental treatment. Even if early trial results are promising, there’s insufficient research to confirm that the potential treatment will remain safe and effective in the long term.
Essentially, it’s a gamble. We hope it’ll work, but we can never be sure. We accept the risk because risk seems better than doing nothing at all.
It’s not limited to clinical trials, either. After a recent appointment at the neuromuscular clinic for Max, Rowen, and Charlie, we decided to switch corticosteroids for our two younger sons. With the new medicine, which has fewer side effects than traditional steroids, we hope our sons will grow a little, and it should be safer for their bones.
We especially hope Charlie’s bones will become stronger. Charlie can still walk, but both of his older brothers stopped walking after they fell and broke a bone in their leg. If we keep Charlie’s bones strong, he may never have to experience a broken leg and the resulting loss of ambulation.
We started the new medicine at the beginning of the week, but it still feels like a gamble. Before that, we were aware of the risk of adrenal insufficiency. The doctors told us it wasn’t something they expected and is easily treatable if it does occur. But we needed to be on the lookout for headaches, diarrhea, nausea, vomiting, abdominal pain, increased fatigue, and low blood pressure.
I want to be like our doctor and not expect adrenal insufficiency. However, I often feel like a poster family for Duchenne. Not only do we have three sons with DMD, but I’m also a carrier. If something bad’s going to happen, I’m always afraid it’ll happen to us.
Yet the side effects from the steroids Rowen and Charlie were using negatively affected their lives. It felt like we needed to roll the dice again. So we decided to take a chance, because if it does help them in the way that we hope, the boys will be healthier and happier. Again, taking a gamble feels better than not doing anything at all.
It already feels like I’m not doing enough, like I’m sitting here watching my sons fade away. In part, that’s because there haven’t always been many options to choose from. Now there are new treatments and more options, but they’re still insufficient to halt the disease’s progression.
As my journey as a mother and caregiver of three sons with Duchenne unfolds, I find myself like a dealer in a high-stakes game of poker. We are enrolled in trials, trying new treatments, and doing things that have never been done before, hoping for a better outcome for our children.
I have no way of seeing the future, so we make the best decisions we can, sometimes in the face of seemingly impossible odds. The most astonishing thing of all is that no matter what we do, no matter how much we advocate, spend, and try, and no matter how well we play the game, Duchenne could still win. Life with Duchenne is a gamble, and we’re just trying to come out on top.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
About the Author
M Waseem zahid
Hello mam. I am from Pakistan .my son 8 years old dmd patient ...I want to treatment but nothing..please if any solution help me ....