Growing Up with FSHD: Lexi Pappas Tells All in New Documentary

Photo: Lexi Pappas. Source: FSH Society.

In her documentary, Lexi Pappas tells the story of her family who is affected by Facioscapulohumeral Muscular Dystrophy (FSHD), which is a condition that was passed down to her and other family members. While the disease mainly affects the scapula, face muscles, and humerous, Pappas' weakest part of her body is her abdominal muscles, which is her back, arms, and legs.

FSHD is one of the most common muscular disorders, and it is also one of the most dangerous ones. FSHD is a muscle disorder that slowly eats away the muscles, leaving them very weak. It generally affects the facial muscles, arm muscles, and shoulder muscles. Even if FSHD is more associated with these parts, it is possible for other muscles to be affected as well.

People with this condition may lose the ability to walk, run, or in the most severe cases, talk. Because of this, patients would often need to have a mobility aid to help them get around. Unfortunately, there still is no cure for this awful disease, although there have already been leaps in medical research pertaining to FSHD.

From Lexi Pappas and her family, however, we learn that though FSHD presents many challenges, there are still ways to triumph over them. It is possible to have a healthy lifestyle while managing the disease.

How does FSHD affect an active lifestyle?

FSHD can have a big impact on those who want to live active lifestyles because the condition weakens the muscles. Major signs of FSHD are weak abdominal muscles, visual impairment, weak cardiac functions, weak facial muscles (this is often the first sign), weak hips, abnormal joints, hearing loss, weak leg muscles, and constant pain and fatigue—all of which can hinder your body from performing well.

According to Pappas, she can’t run, and she also has difficulty walking up the stairs. One of the signs of FSDH is having lordosis or an extremely curved spine, which causes a lot of pain when she moves. She also has a tough time moving her legs because her hamstrings are also affected.

In fact, Pappas recounts that during the 6th grade, her scapula would stick out, making her unable to do certain things during her gymnastics class. Due to her condition, she couldn’t pull herself up the bar like the other kids would. She also tried to run but couldn’t run too fast, which is why she would stick to long jump. She continued to try different sports while growing up, but the symptoms worsened over time, and she couldn’t bear the pain. Eventually, she had to quite. 

Read on to learn more about this new documentary that features Lexi and her family.