Jodi Balog, Pennsylvania, Living With CMT
Jodi Balog has lived with Charcot-Marie-Tooth disease for more than 30 years. Diagnosed at the age of 13, CMT has become all she’s ever known. While CMT is classified as a rare disease, for Jodi — and millions of others — it’s a daily reality.
“Living with a rare disease like this is hard because no one really understands what you’re going through,” Jodi said. “It’s almost like it’s an invisible disease. If I’m sitting down, I look like a normal person, and it isn’t until I stand up and start walking that you can tell.”
From a young age, Jodi struggled with constantly tripping and falling, keeping her from doing the things she wanted — especially sports. No matter how hard she tried, the frequent falls kept her from participating and she eventually had to give it up.
For years, Jodi’s mom took her to multiple doctors to address her constant falling, but the doctors never thought it was a problem and just dismissed it as clumsiness. It wasn’t until Jodi turned 13 that she noticed things were getting progressively worse and she developed severe foot drop. Jodi and her family made a trip to Penn Medicine and received the genetic test for CMT. She was diagnosed with CMT type 1A. While not definitive — her father experienced similar symptoms but was given different diagnoses — it is believed that her CMT was the result of a spontaneous genetic mutation.
“The doctors, I feel didn’t know anything about it at the time. They had to pull out their medical books, so I feel like I’m one of the newest cases. I’m 41 now and to be diagnosed with this at 13, nobody knew of Charcot-Marie-Tooth disease, so, we just went with the flow. I did some physical therapy, but I just wanted to play sports, so I did my best, falling or not.”
Swimming became an outlet for Jodi and the one sport she was able to continue with to this day.
Because of CMT, Jodi has had multiple knee dislocations over the years. Every few years, whether she twisted it wrong, or walked weird, it would dislocate. After each dislocation, it would get looser and looser. This eventually led to an extensive surgery in 2018 where her shin had to be broken so they could realign her kneecap. Unfortunately for Jodi, her six-week rehab turned into more than a year of physical therapy due to complications that affected her Achilles tendon.
Roughly seven years post-surgery, Jodi is still living with the effects — and regrets.
“Ever since my knee surgery, it has made things worse. I do regret getting that, but then again, my knee hasn’t dislocated since. I can’t kneel on my knee anymore like I used to. I have screws literally sticking out of my leg; you can feel them. It just didn’t work out the way we wanted it too.”
After Jodi’s second pregnancy, her CMT rapidly progressed, and she started experiencing the more severe symptoms she lives with today, which includes neurological pain and fatigue.
“Fatigue hits me a lot, it’s a big problem; one of the biggest problems besides the pain. There are days that I want to go to bed before my kids because I’m so tired. It’s debilitating.”
The hardest part about having CMT for Jodi, besides the pain and fatigue, is getting out of bed every morning and accepting the fact that CMT is a part of her everyday life.
“Getting up every day is a challenge. Pain is high, but you just have it in your head that today is going to be a better day. But for me, it’s just accepting the fact that I have this disease, because it doesn’t impact my mind; my mind is like ‘go go go,’ but my body is saying ‘no no no.’ I also must accept the fact that I have to wear braces or ankle-foot orthoses or I have to use a cane if I know I’m going to be walking long distance.”
The physical toll of CMT wasn’t the only challenge Jodi faced. The fear of falling while trying to keep up with friends at concerts or large crowds began to affect her emotionally. Over time, this fear grew into social anxiety, pushing her further into becoming an introvert.
On top of the social anxiety she was facing, Jodi also had to learn to accept that she couldn’t be as present or do the things she wanted while raising her kids.
“When my kids were younger, I couldn’t get down on the ground and play with them without the fear of not being able to get back up if someone wasn’t around, and it was also very hard to sit back and just watch as my husband taught them how to ride a bike, because I couldn’t run next to them.”
With each new emotional and physical challenge that CMT threw her way, Jodi didn’t let them define her. She adjusted and developed a routine to manage the daily realities of CMT.
The first thing Jodi does in the morning when she gets out of bed is she puts her braces on, which are supportive straps that allow her to walk around the house without falling. If she wants to leave the house, she puts on her hard brace with shoes.
Being able to work remotely has helped her tremendously so she not only can save her energy, but she also doesn’t have to worry about potentially falling.
When days are particularly tough for Jodi, she gets support and encouragement from her husband and her two daughters. Whether they’re putting in extra effort around the house, or holding her hand wherever she goes, Jodi feels the love, support and encouragement.
Jodi knows that CMT is hereditary and hopes that her children and future generations can live a life free from the worry of this disease.
“I could cry just thinking about what a cure would mean to me. I know that this disease is hereditary, and I know that it can be passed down, and I don’t want future generations to suffer.”
But while Jodi now speaks openly about CMT, accepting her diagnosis wasn’t easy. For nearly 20 years, she kept her struggles to herself, reluctant to speak about it and let others see the full impact of the disease on her life.
“I didn’t fully accept having CMT. I didn’t stop trying to hide it until probably my 30s. It took a lot, and the CMT Research Foundation really helped me open up about it, and now I am an open book, and the entire world knows I have CMT.”
Jodi is an Ambassador for the CMT Research Foundation and has been actively involved since 2019. Whether she’s sharing her story and raising awareness, or meeting with the researchers behind the scenes, Jodi is deeply committed to the mission of the Foundation and tirelessly advocates to push CMT awareness forward.
“I try so hard to work with the Foundation and spread awareness to find a cure because I know the researchers are behind the scenes fighting for me to find a cure, so I feel like I need to do my part and advocate and spread awareness.”
Jodi’s passion for advocacy comes from a deep, personal understanding of the consequences if a cure isn’t found. She lives with the constant reminder of the toll CMT takes on her body, and the urgency of finding a cure is not lost on her.
“If a cure is not found, I know I will end up in a wheelchair. We have to find a cure now because this is not going to stop; it’s literally eating my muscles away right now as we speak. Just being able to not see CMT in the world anymore would be a blessing, because I live with this every day.”
This Rare Disease Day, February 28, please consider donating $28 or $228 to help make a difference in the lives of patients like Jodi living with CMT. Donate today at cmtrf.org/donate.