Don’t get left behind

Every few weeks, an article will pop up declaring scientific breakthroughs in the medical community. They will herald new and promising treatments for the afflicted. There will be vague explanations of technology driven research and claims that THIS! THIS ONE! is the beginning of the end of suffering for thousands, millions of people around the globe.

Being a broken bodied person, I can’t help but feel excited about each of these discoveries. They’ve regenerated dead nerves! Targeted cancer treatments to only affect cancer cells! Implants that let non-verbal individuals share their thoughts! Mind operated artificial limbs! Lab grown replacements for any body part! Medications tailor-made for rare diseases! It’s all so very thrilling. I might be next! My conditions will definitely be fixable soon!

Then reality sets in. Diving deeper into the research, finding details broken down in plain language by people far smarter than me, arguments from scientist about the cons, and looking at the expected timelines are all activities that bring me back from the fantasy of a “cure”. After all, my medical problems aren’t exciting. And the conditions that plague millions are far more lucrative to treat than to cure. Statistics about migraine sufferers show that we are in the tens of millions. That is a massive portion of the population all feeling a similar pain in a similar place. Many of us have similar triggers and share the experience of wanting to die over the amount and type of pain. Women make up the majority of those patients. Yet, time and time again, a new treatment comes out. A new pill to take that works for some people some of the time. A pill that will cost you a lot of money and will riddle you with side effects. I have nothing against pills as a treatment method. Modern medicine has saved my life and is a part of my daily routine, but what if those medications actually worked to fix the problem? What a novel idea. If research focused on fixing instead of postponing symptoms, patients would no longer be a never-ending source of cash for the pharmaceutical and insurance companies.

I’m not much of a conspiracy theorist. I believe that people are trying the hardest they can to be the best they can most of the time. Unfortunately, I do think logic and examples point to large companies and people in positions of financial power consistently wanting money (and more of it) at the expense of all else. If migraines could be cured with a minimally invasive surgical procedure accompanied by lifestyle changes, a giant subsection of medications (and the billions in revenue) used to treat their symptoms would disappear. For example, my annual bilateral sphenopalatine ganglion block is still considered “experimental” by insurance companies even though it has been in use for decades. This treatment doesn’t cure my chronic migraines, but it lessens the frequency of them by around 20%. That along with daily habits and an emergency pain medication that works as an abortive therapy, has been the most life changing form of treatment that I have found for that condition. That means I am funding less of the daily migraine medication market and it opens my mind to the possibilities of a true curative medical intervention.

Things get more complicated when we look at so-called rare disorders. Although my POTS, gastroparesis, and automatic small fiber neuropathy have a proven connection, they are all treated separately. There aren’t neurologist and researchers out there joining the dots because it’s just not flashy. Why spend money and time on conditions that many people aren’t diagnosed with for years on end. After all, people can live with these conditions. Their lives may be filled with torturous levels of pain and agony. They aren’t able to work or have social lives. They wonder with every waking moment why, how, and what’s next. BUT… they are alive and typically not hospitalized for long stretches of time.

So, what does come next? If they are making all these wonderful advances, when do we, the average patient, benefit? If you don’t have the money to be swept off to a fancy Swiss clinic or you aren’t hand-selected to participate in advanced clinical trials, how do we get our voices heard and our bodies seen? For now, all I can do is make a ruckus. Create large spaces on the Internet where sufferers and researches alike will stumble into a cacophony of desperate people who need hope. I’ll talk to whoever will listen, especially those in positions of power. Most importantly, I will never stop advocating for myself.

There really is hope. Science and technology have the potential to give us all physical relief. If we take lessons from ancient medicine, the brilliant minds of today, and the collective insight of millions of fed-up patients, that combination could create applied medical therapies that create actual cures.


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