There is a big difference in a “treatment” and a “cure”. This is something we learned early on as Ryan began receiving adult stem cell treatments. Many people assumed that when we said we had found a therapy that worked that meant that we had found a cure.
We realized the impact from the new mesenchymal stem cell injections lasts for about 3-4 months. At the 3-month period the improvements begin to taper off and plateau for a couple weeks until we see the traditional effects of Duchenne appear once again.
We have identified that as long as Ryan is able to maintain treatments on the proper regimen of 3-4 months, he is able to prevent the disease from advancing further at an increasing and aggressive rate. We wanted to highlight the importance of the continued therapy because many people simply assume that the treatments can be a one time “cure-all”. Unfortunately as of right now, that is simply not the case.
Making Life Easier
Simple tasks, (everyone without DMD might take for granted) become much easier for the first 3 months after each round of therapy. From holding his phone, toothbrush, to picking up his utensils while eating, even when he is at his desk working on his music, simple tasks from controlling the mouse to working his computer keyboard become much easier. These small improvements are leaps and bounds for Ryan as it provides him an independence that without the treatments, he would never have again.
How it works
Ryan’s disease, Duchenne, is caused by the absence of a functional protein on the mutated gene, called Dystrophin.
Dystrophin is necessary to break down and repair muscle tissue – without it the cells are unable to hold their shape causing fibrous tissue to form in the muscle and increased inflammation throughout the body and immune system.
For Ryan, these newly injected mesenchymal stem cells home in on areas of inflammation and identify the cells in his body which lack the Dystrophin protein. At this point the new mesenchymal stem cells repair the cells negatively impacted by his disease and allow them to produce Dystrophin which allows his body to fight back against the disease for roughly 3-4 months.
After 3 months, the newly injected stem cells are essentially “used up” which means at this point the improvements plateau for a couple weeks and then eventually are all overtaken by the disease once again.
On average the treatments first begin making a difference within two weeks following each round of therapy.
During the next few weeks we see a significant improvement in Ryan’s respiratory and muscular strength. We notice he finds it easier to breath and has less shortness of breath. We validate this and many other improvements in his pulmonary function by measuring through a weekly inspiratory and expiratory lung function test.
We notice continual improvements in his muscular strength related to his core, trunk strength, balance. As well as improved ability to utilize his upper extremities, (his arm, and grip strength)
It is frustrating this not a “one-time fix” and some people see this situation as inadequate and not worth believing in. Our only response is, why not accept a continual and proven therapy vs. having no improvement at all?
We are thrilled to maintain Ryan’s treatments on a continuous basis as we know that the researchers are steadfast working to improve this therapy and eventually make this therapy a one-time fix.
“By joining us in Coming Together, we will transform our hope into a solution we can all believe in”
– Blake Benton