As years of tears rolled ever-so-slowly down 45-year-old Jennifer Frederick’s cheeks, her 19-year-old daughter, Holley, reached for – then cradled in her right hand – her mother’s left hand.
Standing one step to the left, Rock Valley Physical Therapy’s Chelsey Ferguson, PT, DPT, Clinic Manager/Savanna, Illinois, took the right hand extended to her by Jennifer Frederick and then the left hand of Holley Frederick.
Trying as she might to fend them off, tears began their own ascent down Ferguson’s cheeks.
The trio had formed a triangle. Their bond, almost seven years in the building, is iron clad.
“I’m just so happy to know what we are dealing with and there is hope for Holley,’’ Jennifer Frederick said, sharing that after several years of compassionate therapy under Ferguson’s watchful eye – and Ferguson’s endless research and effort to find the Fredericks help – they finally have answers. Jennifer and Holley Frederick, two of life’s amazing souls, are in a daily battle with Ehlers-Danlos syndrome.
EDS is a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.
Commonly misdiagnosed as myofascial pain syndrome, Jennifer Frederick had been diagnosed with this previously and was told by medical professionals they were not sure what she had.
The Fredericks, Jennifer and Holley, suffer from a combination of all three, though joint hypermobility has been dominant in Jennifer and Holley’s battle. Joint hypermobility means a person’s joints have a greater range of motion than expected or usual and joint instability. Joint instability occurs when the bones of a joint are not held securely. This can lead to joint subluxations, dislocations, sprains, and other injuries. Joint instability can cause both acute and chronic pain – migraines and digestive issues – and interfere with daily life.
The struggle – for many years – has been finding an expert in the field to confirm the diagnosis. Boxes, thanks to Ferguson’s endless research, guidance, and Jennifer Frederick’s amazing persistence, Jennifer and Holley have found a physician with expertise in EDS.
“I knew I was just too “stretchy,”” said Jennifer Frederick, who despite her many physical trials along her path, remains upbeat, positive, and harbors a unique sense of humor.
“You know you are supposed to be flexible to a certain extent, and I was beyond that, but not in a good way. Holley is the same way. For me, it began with a tear in my meniscus that Chelsey helped get me back on my feet.”
“Even back then Chelsey said something wasn’t right,’’ Frederick continued. “I did have joint (hypermobility) issues and would injure easily. Same with Holley. Each time Chelsey would get us back also after an injury – doing all she could with strengthening exercises, working joint stability, and improving core strength.’’
Knowing there was a physical issue that led to her injuries, forced Ferguson to dig deeper with Jennifer Frederick, who is on tap for knee replacement surgery in the not-too-distant future.
“Here is where you really have to give Chelsey credit,’’ Jennifer Frederick said. “She noticed similarities to my daughter and I with our flexibility. She was already making a deep dive in her research finding ways to understand what I was going through and how she could improve my life when I got hurt. Then she noticed it with Holley and the injuries she would have. She never turned her back on trying to find out what the issue was with us.’’
What Ferguson believed was causing Jennifer and Holley distress – through testing, observation, research and consulting her Rock Valley peers – was EDS. The struggle then became finding a professional and a provider to confirm what Thompson believed was the issue.
And a plan to treat it.
“You don’t want to say anything bad, but we could never find anyone who wanted to take on and deal with what we were struggling with,’’ Jennifer Frederick said. “Some said they simply couldn’t do anything for us, and we ran into several dead ends. I’m not singling anyone out. It’s hard because you cannot treat something you don’t know about. Chelsey helped us find an expert in the field – a doctor not too far from here (Savanna). I went and checked all the (EDS) boxes when tested. Holley is next.’’
For 19-year-old Holley Frederick, knowing what lies ahead – and a hope to treat the issue — is life-changing.
“I have always wanted to know what when participating in athletics my ankles were easy to roll and why I had other issues,’’ she said. Holley Frederick, it must be noted, was only able to complete one full high school season of track because of the pain she was having. The season she competed in was not pain free, but through grit and determination she managed to push through it.
“I know this is hereditary, I know I have a doctor that can confirm what we thought, and we will always have Chelsey,’’ Holley Frederick shared. “It takes a load off my mind and allows me to move forward.’’
Modest to a fault, Ferguson simply wanted what was best for the Fredericks, to advocate on their behalf.
“Wonderful people, who are more than just patients,’’ Ferguson said of Jennifer and Holley Frederick. “I can help them with certain things and with confirmation (of EDS), we can move forward. We can do some things for Jennifer, but we can really set a path to making life better for Holley. One of my goals has been to find a diagnosis and move ahead. I believe we have reached that point. I’m excited because Jennifer and Holley are amazing people and I want what’s best for them and to help them reach their goals.’’
The Fredericks say Ferguson has always been much more than their therapist.
“Chelsey is part of our family,’’ Jennifer Frederick said. “She has always been there, going way beyond what her job is. We have the greatest faith in her, trust her, and know – like it has been all these years – she wants what’s best for us. We have shared many long conversations and tears over this. We owe her so much. I’m excited and truly optimistic for Holley’s future.’’
By: Johnny Marx, Rock Valley Storyteller