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Run for My Buddy raises awareness, funds

March 31, 2016   ·   0 Comments

The conversation around invisible illnesses has exploded in recent years. As more awareness is being brought to mental health issues, we have seen the stigma slowly start to change. But while mental illnesses and depressive disorders have benefitted from this, there are many other ‘invisible’ illnesses that are being left behind in the dust.

An invisible illness is a disease or illness which does not have visible physical affects. While some of the side effects, such as exhaustion and mood can be physically perceived, those usually come later and are rarely recognized as the effects of such things. Some of these illnesses include neurological diseases such as epilepsy, Lupus, different heart conditions, Fibromyalgia, Chronic Myofascial pain, and more.

Oftentimes, many of these illnesses are not only difficult to recognize, but can go undiagnosed. The side-effects can often be written off as anything from a lack of exercise and proper sleep, to misdiagnoses of depression or anxiety disorders.

One local resident who is battling Chronic Lyme Disease as a young adult has decided to use her story to help raise awareness of the disease as well as funds for herself and her mother to receive the proper treatment.

“I [became] sick five years ago, to the point that it was completely debilitating, where it took over my life,” explained Noelle Hooker, a 20-year-old nursing student who lives in Orangeville. “I started experiencing chronic fatigue, and often couldn’t get out of bed. My head felt like it was full of fog — I could not think straight and I had trouble understanding people.”

Prior to these symptoms showing up, Ms. Hooker described herself as athletic and active. She often participated in school sports and played soccer competitively outside of school. While she admits high school added a lot of extra stress to her life (such as the need to fit in), she knew it wasn’t what she was experiencing in life that was causing these new symptoms.

“My memory was horrible; I would lose everything,” she added. “I could not even force myself to go to the gym or soccer practice. I had lost myself.”

When she went to the doctor, she was first misdiagnosed with an under-active thyroid. Her symptoms, she was being told, were all in her head, and she could get past this.

“Many of my loved ones wanted to believe that I was still the athlete, still the go-getter that they knew,” said Ms. Hooker. “I wanted to believe that too. But this was not all in my head like the doctor was implying. There came a time when I had to stop ignoring reality and face my fear.”

Deciding to take her health into her own hands, Ms. Hooker began to Google doctors and eventually contacted one that practiced holistic medicine and had a lot of good reviews. She was put on a waiting list, and three months later received an appointment through a cancellation.

The doctor ran a series of tests on her, and was highly concerned about one particular result — her CD57. The healthy result for this is over 100, and Ms. Hooker’s was hovering at 36. Shortly after the testing period, she was diagnosed with Chronic Lyme Disease.

CDL (also called post-treatment Lyme disease syndrome) can come from the result of being untreated for Lyme disease, which is often transferred through tick bites. According to lymedisease.org, if the illness is not diagnosed and treated in its early stages, the spirochetes spread and can ‘go into hiding’ throughout the body.

Symptoms can take weeks, months or even years before showing up, and while some may disappear without treatment, other times it can cause people to develop more severe symptoms that are harder to resolve, which is the point it becomes Chronic Lyme Disease.

“I was scared and I didn’t know what to think,” said Ms. Hooker. “Deep down, I believed this was the answer to my mystery. My nightmare, however, was far from over.”

Although treatment for Lyme Disease is now available in Canada, treatment and testing for Chronic Lyme Disease are not. This meant Ms. Hooker had to travel to the States for treatment, at a cost that neither herself or her parents could afford.

“The obstacles did not stop there,” she shared. “I still had to convince people that I had Chronic Lyme Disease. My mom had been sick for a long time as well, diagnosed with rheumatoid arthritis, Fibromyalgia, Chronic Fatigue Syndrome, depression and many more. She was given more and more prescriptions to help her symptoms, but ultimately they made her worse. The more I learned about CLD, the more I began to connect the dots with her.”

Her mother also tested positive for the disease, and began her own fight.

“We both go to a doctor in New York and are treating this disease with antibiotics and herbs,” she explained. “Many days are hard and we are faced with symptoms that are completely debilitating to us.”

Ms. Hooker has been there with her every step of the way, adding that her mother is one of her best friends. During an interview with The Citizen, she passionately explained that the battle is with the two of them together, or not at all.

“We now have to go to the Sponaugle Wellness Institute in Florida because the current treatment is not working to put us into remission,” she said. “It will be $75,000 for both of us. I will not go for the treatment without my mom, even though she wants me to.”

Ms. Hooker has used her battle to speak out about stigma surrounding invisible illnesses and the dangers the stigma surrounding them can cause. She also uses social media to spread awareness and positive, hopeful messages.

In May, she and her boyfriend Shaun Booth are hosting a run at the Island Lake Conservation area to help raise money for the treatment she and her mother need and speak out about the struggles those with CLD face. Despite all the hardship she has faced with this disease, Ms. Hooker continues to have a passionate and positive outlook.

“I am very grateful to have encountered this journey because if I did not, my mom would not have the answers to her health issues,” Ms. Hooker wrote on the run’s website.

The 5km run/walk will be held on May 7, 2016 on the Island Lake trails, and was named Run for My Buddy after the name she and her mom called each other as she was growing up. The cost to register for the event is $35 and will include a barbecue for participants. All proceeds will go toward treatment for Ms. Hooker and her mother.

“For anyone fighting an invisible disease, never give up,” Ms. Hooker added. “Always believe in yourself, even when no-one else will. It is the biggest challenge, and not everyone will understand, but being vulnerable is the only way you will find those that do. Giving up is not an option.”

For more information, or to register for Run for My Buddy, visit http://raceroster.com/events/2016/6062/run-for-my-buddy. The run takes place in conjunction with Lyme Disease Awareness Month, which is held in May each year.

Written by Tabitha Wells


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