We Will Never Find a Cure

(Click on the picture if you are not squeamish)

Four piggies reinforced my dilemma.

“How did you burn just the ends of your toes? Did you dip your foot in the boiling water?”

I chuckled at the obvious sarcasm, my first lighthearted moment since the accident. Moments passed, two seconds, five seconds, and then I realized the ER doctor was not cracking a joke. Either assessing my potential for self-harm, an attempt to get the truth on domestic abuse, or pure morbid curiosity, she paused her examination and waited for my answer. I stumbled through my explanation of the physics (the pot spilled in front; my foot was extended and just caught the splash edge but missed the heavy pot and most of the water). Another pause, long enough to make me uncomfortable, before her tiny shoulder shrug dismissed the conversation and sent her back to the task at hand. She believed me, or at least heard enough of my rambling to realize a better answer wasn’t coming.

Second-degree burns on four toes of my right foot are the latest complication of my multiple sclerosis. Muscle spasms, weakness, and trouble with coordination were the symptoms that sent boiling water and penne pasta across my kitchen floor and over the tips of my piggies. The only way to prevent this from happening again is for me to stop boiling water. Stop cooking pasta. Stop making lunches for my daughter.

Stop doing things.

Stop living.

I will never stop, so all those options are out the window.

There are many ways to treat muscle spasms, weakness, and trouble with coordination. Rehabilitative therapy and medications can lessen the symptoms. I have realized success through both treatment options, improving my symptoms in the past. As my multiple sclerosis progresses, a countless array of symptoms worsens. Rehabilitative therapy and medications continue to work, but not enough. In terms of function, it’s a losing battle in the long run. Only by treating the root cause–multiple sclerosis–can we stem the tide.

Stopping multiple sclerosis will stave off the advancing debilitation for those of us fighting this disease. Reversing multiple sclerosis will give us a chance to live in a world we considered lost forever. Preventing multiple sclerosis will benefit generations to come, saving them from this nightmare. We can’t perform any of those three miracles because we cannot find the cure for multiple sclerosis because a cure for multiple sclerosis does not exist.

We must create a cure if we want to prevent or reverse the devastating effects of multiple sclerosis.

This June, a team of scientists published an updated Pathways to a Cure Roadmap. Their conclusion was simple and direct: “Scientific breakthroughs leading to MS cures will require strategic investments in research priorities and enhanced global collaboration among all stakeholders in the MS movement” (Bebo et al 5). We are close, but we’re not there yet. How close? No one knows because what they are trying to develop does not yet exist.

Yet.

I know Bruce Bebo. He is a crazy-smart doctor, the kind of smart we need to develop a Pathways to Cures. He is also a person who takes this disease personally and burns with the need to help those of us suffering. I feel as if it’s his personal charge to look out for each and every one of my 10 piggies. Until they are safe from the next MS-related scalding incident, he will not rest. He crafted the updated roadmap along with nine colleagues, using feedback and data from almost 200 scientists from industry and academia, healthcare providers, lawmakers, policymakers, funders, and the bounty of MS patients. This global MS movement involved 15 countries and will never quit until the cure is found (1).

What does this mean for me? Hang in there and keep fighting. Regardless of my pessimism right now, I need to give myself a fighting chance if I hope to celebrate when we reach that threshold and cross it.

What does this mean for us? Donate. We need to support Bruce and the armada of people and resources dedicated to finding the cure. In so many different ways, for so many different reasons, support comes down to money. Every donation helps. Every dollar matters.

Please support our fight to end the devastating effects of multiple sclerosis, now and forever: https://MSSociety.donordrive.com/participant/Rogue.

My piggies thank you!

Please follow my journey:

https://NeverStopNeverQuit.com

https://www.facebook.com/NeverStopNeverQuit

https://twitter.com/NStopNQuit

 

https://linktr.ee/KevJByrne

Works Cited

Bebo BF, Banwell BL, Whitacre CC, et al. The refined Pathways to Cures Research Roadmap for multiple sclerosis cures. Multiple Sclerosis Journal. 2024;0(0). doi:10.1177/13524585241266483