“When other kids trip over they will get up, brush the dirt off and carry on – when my kids trip over they risk dislocating their ankle.”
Hayley Clapham and her children always prepare for the worst.
“The boys have braces in their school bags and I carry tape, compression gloves and a first aid kit in my handbag,” she said.
“We also have a special needs pram, walking stick and a medical case in both cars consisting of tapes, braces, pain relief and first aid.”
That’s because she and her boys, Zachary (5) and Bradley (9), have a rare genetic condition known as Ehlers Danlos Syndrome (EDS).
EDS is a term used to describe a collection of inheritable connective tissue disorders which make the human body extremely fragile.
The syndrome often makes people hyper-mobile and flexible.
Symptoms commonly affect the joints, heart, nervous system, skin, eyes, gastrointestinal tract and other areas.
“We experience frequent dislocations and subluxations of various joints, we have delicate, slightly stretchy skin that bruises and tears easily,” Ms Clapham said. “We have numerous musculoskeletal manifestations including scoliosis and flat feet, we have frequent falls and injuries and we also all have heart conditions and stomach issues.”
Thankfully my sons were lucky to be diagnosed quite young which means that physically they aren't as impacted yet.Hayley Clapham
The Claphams were diagnosed with the syndrome in 2016 by a geneticist.
Before that Ms Clapham said she had no idea what the condition was.
“As a child I was very hyper-mobile and I always bruised easily – however it wasn't until the birth of my first son that I really saw my body literally fall apart and it has continued to fall apart since,” she said.
“Unfortunately I was diagnosed as an adult so at the time of diagnosis my health had deteriorated quite severely.
“Thankfully my sons were lucky to be diagnosed quite young which means that physically they aren't as impacted yet.
“They also have access to early intervention which won't prevent symptoms but will help to decrease the impact of the syndrome.”
Ms Clapham hopes to raise awareness about the under-diagnosed condition.
“Apart from the condition itself, the other biggest challenge is the lack of awareness,” she said.
“Particularly in our government’s health and disability sectors. Whilst we have a great team of supporting and knowledgeable specialists and allied health professionals, I have encountered several problems when it comes to hospital visits.
“EDS is a debilitating and serious chronic condition that is degenerative in nature. Whilst there is no cure, a diagnosis is still important, as it allows access to the appropriate management of symptoms.
“So please if you are hypermobile, have chronic pain or a history of musculoskeletal injuries or conditions then ask your doctor EDS.”