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Why Is A Cure Needed?

 

 

By Dr. Frances L. Shavers

 

 


 

The answer is simple, like many chronic conditions, Trigeminal Neuralgia (TN) steals the lives of sufferers and those close to them.

 

Here is my story: I led an enjoyable, fast-paced and full life before the first pain attack, four years ago.

I was up at 5:15 a.m.; taught a 6:00 a.m. yoga class and then split my day among meetings, phone calls and my computer. In the evenings I worked out, visited friends or took long walks. Weekends were a combination of relaxation and work obligations.

I worked directly with the president of a major university, addressing every aspect of the educational institution. My position allowed me to represent the university from Beijing to Uganda. The breadth of my responsibilities was wide: athletics, student affairs, community and public relations. I also welcomed opportunities to work with the students.  I loved my work; it was my vocation.

Then one evening, I experienced my first pain seizures. They increased in frequency and intensity until I could sleep only 2 to 3 hours a day, sitting up in a chair to avoid triggering a seizure.

Almost overnight the life that I knew, loved, and worked hard for, evaporated due to the pain and the debilitating effects of the medication I took to lessen the pain. I lost my cherished independence. I couldn’t drive; I couldn’t fly (and consequently did not see my father for two years). I stopped teaching yoga, the illness eventually forced me to resign from the position I loved. Everything from a cold breeze, a brush across my face or a small movement of my hand could trigger massive pain. I needed help with the simplest of tasks.

For months I saw doctors but there was no clear diagnosis, no relief, and countless failed treatments. I felt as if my world was shrinking.  Finally, seven months after the first attacks, I was diagnosed with trigeminal neuralgia.  One type of facial pain. 

 

My story is not unique. Many go without an accurate diagnosis for months if not years. Many TN patients and their families adjust their personal and professional lives to deal with the pain; often feeling alone and misunderstood in their pain and suffering.

The solution is more research leading to breakthroughs in treatment and most important, curing or preventing TN and other facial pain. Unfortunately, financial resources have been inadequate to support research for TN and other types of facial pain. Two things can be done to help.

First, health professionals, particularly doctors, must become better informed about facial pain. A patient shouldn’t need to undergo needless treatments, procedures and therapies before receiving an accurate diagnosis. More information must be taught and shared in medical schools and other training opportunities allowing doctors to quickly and correctly diagnose and treat TN and similar facial pain syndromes.

Second, we must create a better-informed general public. If sufferers had some general knowledge about facial pain, it would greatly reduce the time spent Googling “electric pain behind eye.” Patients should enter into discussions with their physicians armed with knowledge and curiosity.  Information gives you the confidence to better advocate for your treatment. Advocacy groups, such as TNA - The Facial Pain Association, should be supported and publicized more.  We should be talking more about the work of these associations -- and hence, trigeminal neuralgia itself, in this country and across the world. Since my diagnosis, I’ve returned to some aspects of my life, but I’ve placed myself on “sabbatical” from others.  I’ve had numerous surgeries, treatments, but now I live on medication that zaps my energy levels and dulls my cognitive capacity.  The seizures still occur, more frequent than I would like, but I remain hopeful that a cure can and will be developed.  I rest these hopes on YOUR support of the Facial Pain Research Foundation (www.facingfacialpain.org) and those organizations that provide information and advocacy. 

 

Dr. Frances L. Shavers lives in Niles, MI with her husband, George Horn, and their two dogs, Hannah and Wrigley.

 

For more information on Frances’ TN experience, visit

http://www.youtube.com/watch?v=uzx_m-a2BJw

 

 

2014 ICE Athletic Center Golf Outing

 

By Pamela Unverzart

 

 

 

 

 

 

Frances Shavers and Amy Jones are not strangers. Neither would they be classified as “pick-up-the-phone-and-chat-awhile” close friends.  They are merely acquaintances…two people brought together by the simple coincidence of working together at a common location – The ICE Athletic Center -- where Frances taught yoga classes and Amy was the head trainer.  Amy would often watch Frances’ yoga classes and Frances would sometimes take Amy’s exercise classes, but besides that, there were no after work coffees or follow-up girls-nights-out.  They just simply KNEW one another.

 

Without even recognizing it, though, these two women share a personality trait, one that’s helped light their way through many dark days, assisted in navigating the twists and turns of life’s most complicated mazes, picked them up and carried them over the mountains ahead and lifted them out of valleys so deep that only the mistiness of clouds were visible above their heads. Their common personality trait is passion.  But not just passion.  They can also both call claim to a by-product trait that doesn’t necessarily come with a passionate personality…that by-product being compassion.  Frances and Amy…both passionately compassionate women.

 

As a co-worker, Amy knew that Frances was sick, or at least that something had begun to happen to Frances physically that was out of the norm.  Oftentimes Frances would have to stop in the midst of a yoga class because she was having an “episode.”  Episodes usually meant Frances would suddenly curl up tightly for a few moments speechless, her face, contorted in pain, hidden between her knees, her usually deep, soothing yoga breaths turning abruptly to quick, painful gasps, a wave of her hand in the air to ward off questions.  The episode would come quickly, then – from a bystander’s view at least – go away just as quickly.  And Frances, perhaps a little shakily, would press on with a smile.

 

Amy eventually became aware of the name behind Frances’ episodes…an odd sort of disease she’d never heard of before…Tic Doulourex, a/k/a Trigeminal Neuralgia (TN)...but it wasn’t until Amy watched the video Frances made concerning her fight with the disease did Amy realize TN’s impact and fully understand the incredible strength that Frances pulled from in order to keep going despite TN’s agonizing control of her life.

 

Frances’ video touched the core of Amy’s compassion, and in the touching, brought out the passion that Amy puts into every goal she sets for herself.   Knowing that the ICE Athletic Club and Morris Park Country Club had plans to put on some sort of corporate fundraising event in the near future, Amy felt there was no better fundraising event they could put their efforts into than supporting research for a cure of the disease that Frances and millions others like her suffer with on a daily basis.  Amy’s passion for the idea easily swayed the two corporate general managers and the 2014 ICE Athletic Center Golf Outing was born.

 

Taking the reins on the details, Amy moved forward quickly. With the dedicated support and assistance of several ICE co-workers, friends of Frances, and Frances and George themselves, sponsors were found and golfers located to pack the green for a successful golf scramble event.  Several teams of golfers, both two-man and four-man, were organized from the corporate sponsorships.  A silent auction and raffle were scheduled, and after a mere two months of some passionate days and nights, everyone’s hard work and commitment became an extremely fun-filled, rewarding golf fundraiser at the Morris Park Golf and Country Club’s beautiful golfing facility…raising over $8,200 for research for a cure of Trigeminal Neuralgia and other facial pain neuropathic disorders. The entire donation will be matched by the William H. and Leila A. Cilker Genetics Research Program to Find a Cure for Trigeminal Neuralgia, making this two-month mad dash a definite hole-in-one accomplishment!

 

 

 

At 75 degrees and sunny, September 29th could not have been more perfect; the catered lunch could not have been more delicious. The friendships made during the event were real and enduring. The awareness for the need of a cure of this debilitating disease was wide and far-reaching.  Because of one woman’s strength to share her story via social media and another’s giving passion, the coffers of scientific study were funded further…reaching ever closer to the day we End the Pain. 

 

Please visit the link to Frances’ video and watch this woman’s touching story honestly explaining the heart-wrenching changes TN has wrought on her life. One picture may be worth a thousand words…but Frances’ video touches thousands of hearts.  Like Amy, you, too, can help The Facial Pain Research Foundation’s research for a cure. We are ever nearer… perhaps a few simple microscopic views away from that cure. Call The Facial Pain Research Foundation today at 352-332-1613 to see how you too can help change tomorrow’s future for so very many in need of that change.

 

 

 

 



 

 

 
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