Faces of Multiple Sclerosis: Two Sisters, Two Very Different Experiences
Sisters Kristen (Henry) Yeager and Jessica Henry grew up in the West Freedom area and graduated from Allegheny-Clarion Valley High School, Kristen in 2004 and Jessica in 2008.
Jessica’s battle with multiple sclerosis began in 2009 when she was just 19 years old.
She was working at a Halloween store in the Clarion Mall when she began having some strange symptoms, experiencing random numbness and tingling. During that time period, she was also taking classes at Clarion University, and shortly after the symptoms began, she was feeling very ill and took a day off from her classes.
“That was when the swine flu was going around campus, so I decided to just stay home that day,” explained Jessica.
She was living in Clarion with her sister, Kristen, and her mother, who works in the healthcare industry in Clarion, dropped by to check in on her after work that evening. When Jessica had so much numbness in her feet and legs that she had difficulty walking from one room to another, her mother realized something could be seriously wrong.
They contacted her physician at the hospital, who asked her to come in immediately. At that time, he believed she may have Guillain-Barré syndrome, a rare neurological disorder in which the body’s immune system mistakenly attacks part of its peripheral nervous system. As it can be a life-threatening condition, they didn’t want to take any chances.
That night her mother and sister sat up with her all night, making sure she didn’t begin having any respiratory issues, and the next day she was admitted to the hospital for further testing and observation. Eventually, following a spinal tap and an MRI, just one month before her 20th birthday, the doctors had a diagnosis: multiple sclerosis.
Multiple sclerosis, which affects 2.5 million people worldwide, including 400,000 in the United States alone, is a potentially disabling disease of the central nervous system. It occurs when an individual’s immune system attacks the myelin, which is the fatty substance that surrounds and insulates the nerve fibers, as well as the nerve fibers themselves.
According to Jessica, she didn’t know much about MS at that time and began doing some of her own research. At the same time, she had to begin physical therapy to learn to walk again because she had lost function in her legs due to the numbness.
“I was very concerned about ending up in a wheelchair and not being able to go on with my life like a normal adult,” she noted.
Since her diagnosis nearly ten years ago, Jessica says her life has changed immensely. She has been through numerous treatments, some of which even caused her additional problems.
“In the beginning, I was relapsing just about every other month and had to be on high dose steroids which started to have an effect on my heart.”
While steroids are commonly used to control some of the symptoms of MS, Jessica can only use them for very short periods of time now due to her cardiac symptoms. Her cardiac issues also limit some of her other treatment options.
Currently, she is on a chemotherapy drug called Rituxan which, while not technically MS approved, has proved to be more effective than other treatments in her case. However, the treatment itself also has drawbacks. She goes for treatment every four months and says each treatment knocks her down for about a month.
Between the issues from her treatments and her struggles with other symptoms ranging from extreme fatigue to relapses, she is currently unable to work or return to school.
“I’m never really sure from day to day how my body is going to act, especially in relation to the weather, which is a huge thing for me. When it storms or there is high heat or extreme cold, all of those things play a big role in my life now,” said Jessica.
“One thing that affects almost all people with MS is extreme fatigue. It’s one of the worst things and something I wish that no one had to deal with. You could be fine one minute, talking to someone, and the next minute you’re just out or absolutely have to sit down because you just can’t go anymore.”
She noted that one of the things that many people don’t understand about MS is that it varies so widely from case to case.
“Some people can still work full-time jobs and lead very active lives and then there are other people who are wheelchair bound or bed bound. It’s very different from one person to another.”
She has seen some of those differences herself, as her sister, Kristen, began experiencing some familiar symptoms in August of 2016.
Kristen’s symptoms began with some seizure-like activity, but then she developed numbness and tingling in her feet, legs, and hands. She went through several misdiagnoses before her doctors finally came to the conclusion that she, like her sister, had MS.
“When I got the firm diagnosis I was happy to have something concrete, but had my concerns too,” Kristen said. “I know what I had watched my sister go through, and was mentally preparing for everything.”
However, in Kristen’s case, the MS symptoms have been somewhat milder, and she has been able to continue working at not only her full-time job as a supervisor at Clarion County 9-1-1 Center, but also her volunteer positions as an EMT with Knox Area Ambulance Service and Knox Volunteer Fire Company, as well as her position as the Local Emergency Management Coordinator (LEMC) for Salem Township, Elk Township, and Knox Borough, and even received a Keystone Emergency Management Association (KEMA) Municipal Coordinator Award last year.
While her condition hasn’t prevented her from continuing in all of her position, she notes it does sometimes create some limitations and other issues.
“I fatigue quicker now and falls are common. At times memory can be an issue, but thankfully that has never affected me in my careers,” she said. “I am not sure what I would do if I was unable to work. I am still blessed that I can work.”
Considering the vast difference between her experience with MS and her sister’s experience with MS, Kristen is also very aware of how diverse a condition it is.
“MS is a snowflake disease. No two cases are the same.”
She also noted that MS is also often an invisible disease, which can make people less understanding about the difficulty it can cause those living with it.
“To the normal person we may look fine, but we are truly sick. When we say we are hurt or tired, please don’t make comments like ‘you are always tired,’ or ‘you are always sick,’ or ‘it is always about your MS.’ Have patience with us. Educate yourselves. We are not contagious.”
(This is the third article of a series of articles in honor of Multiple Sclerosis Awareness Month.)
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