In the quiet heart of Oley, Union Jack’s Inn on the Manatawney came alive the evening of Oct. 25 in an effort to support an important cause.
The event was “The MS Monster Mash Bash cuz MS is BS” fundraiser, a Halloween costume party complete with raffles, live music and food to support research for a cure for Multiple Sclerosis in honor of Pottsgrove teacher Melissa Sosenko DeStefano, who is battling the disease herself. The fundraiser not only raised money to support the effort, but also highlighted the need for awareness.
I want to personally thank Mel’s Support Squad for hosting this event. I have battled this disease personally for 21 years, and to see the comradery and upbeat moods of everyone was truly a boost for my mindset.
Until the last few years, I have kept my diagnosis as private as possible, but lately, I realize that this is one battle a person can’t fight alone. There is no shame in asking for help or saying no and no shame in being scared. What is a shame is to feel alone and abandoned and to walk away from what you enjoy. We all have to deal with what life dishes out to us, and it is in times like this we find out who our true friends really are.
If we want to deal with this terrible disease, it’s important to educate the public about it.
Multiple Sclerosis is considered an autoimmune disease that affects the central nervous system of adults. Researchers do not have an exact cause, though several theories have been introduced to include genetics and environmental issues. Unfortunately, in recent years, the number of children being diagnosed with the disease has also spiked.
Surfacing as visual problems, gait/coordination issues or fatigue, the disease often strikes between 20 and 40 years of age, an adult’s prime years when they are settled in a career, raising a family or both. MS has no cure and does not gender discriminate. Celebrities such as Teri Garr, Montel Williams and Clay Walker are just a few who suffer from the disease.
In the United States alone, there are between 250,000 and 350,000 cases of Multiple Sclerosis with about 200 more being diagnosed each week. Over the past 25 years, fundraisers have helped launch many disease-modifying drugs to help slow the progression, enabling many to continue a very normal, but modified, lifestyle.
The easiest way to explain Multiple Sclerosis is to compare it to electricity. Nerves are surrounded by myelin, which allows signals to be transmitted throughout the body, similar to an electric wire that is surrounded by its plastic sheath. When the sheath is exposed, so is the wire, which could potentially disrupt the electric being transmitted to the end product. When the immune system attacks itself, the myelin begins to break down in the central nervous system. The result can cause problems with vision, gait, fatigue, paralysis and a shortened lifespan, but each person experiences different symptoms.
Researchers are constantly striving to find the cause and the cure. Until recently, injection and infusion therapies were the only options for patients. Today, neurologists are now able to offer oral medications as an alternative. Every patient responds differently to the medications and each is monitored closely by his or her doctor through blood tests, brain and spinal cord MRIs. What is right for one patient may not be right for another, and over time, patients may have to change their medications to keep up with the progression of the disease.
Life does not stop with a diagnosis of MS; however, chances are it will need to be adjusted continuously as the disease progresses. Fundraisers such as the Monster Mash Bash cuz MS is BS give hope to those with the disease and those who care for them that they may someday find a cure. But until that cure is found, everyone with the diagnosis needs to educate themselves on the disease, maintain a positive attitude, minimize stress whenever possible and join in the fight to find the answers.
To learn more about MS, please visit http://www.nationalmssociety.org.
