Mother with feet-shrinking condition only got diagnosis after going online
Sophie Earl-Park suffers from Charcot-Marie-Tooth disease (CMT), a group of inherited disorders that damages nerves outside the brain and spine, as well as a number of other health conditions.
Mrs Earl-Park said she shared a picture of "curling and arched" feet on Facebook and someone contacted her to ask if she had CMT.
She said it was a "eureka" moment and she later received a diagnosis after being referred to a neurological expert by her GP.
The 29-year-old, whose feet have shrunk from a size six to a size five, is trying to raise awareness of her condition during CMT awareness month with the charity CMT UK.
Mrs Earl-Park was born with congenital hip dysplasia and has had 14 major hip operations since birth.
When her son Bentley - now aged six - was born, her hip socket fractured in four places which ultimately meant she needed a hip replacement.
She told the Press Association: "After the hip replacement I was unable to recover at a normal speed and was made to feel silly by my consultant, but I knew there was something else pretty major going on with my body, as my legs and arms were getting weaker and weaker to the point where I struggled to even hold my son to bottle feed him."
Three years later, when she was 26, she was diagnosed with Ehlers-Danlos syndromes (EDS), which is a group of rare inherited conditions that affect connective tissue.
"I joined the EDS Facebook support group and shared a picture of my curling, arched feet and asked if anyone else had the same. A lady messaged me to say my feet looked like hers and she had Charcot-Marie-Tooth (CMT) - it was a eureka moment," she said.
"I immediately Googled CMT and found I had all the classical symptoms - my legs are shaped like an upside down champagne bottle, I've got hammer toes and high arched feet, swan neck fingers (which means they're bending inwards) and I've got hip dysplasia, which is directly linked to CMT.
"In addition, I have foot drop on both feet that requires me to walk with my legs up high in order to stop them dragging on the floor.
"Luckily my new GP had seen CMT in other patients, recognised the foot deformities and referred me to a neurologist. As soon as I walked into the consultant's room he said he knew I had CMT."
Mrs Earl-Park added: "It was such a relief to be diagnosed, as it's meant I've been able to do things differently.
"I've been given a wheelchair for long days out, ankle supports and I've also got a mobility scooter to get around, as my CMT is quickly progressing and it's becoming increasingly difficult and exhausting to walk.
"Living with CMT can be challenging on a day-to-day basis and being a 'normal' mother to my son is hard because I can't do all the things I want to do with him in the way my peers do with their children.
"On top of all this, my feet have shrunk from a size six to a five and because my arches are so high, my feet are wide so it's a struggle to get shoes - although on the plus side, Sketchers are brilliant."
The charity CMT UK is raising awareness of the disorder throughout the month of September.
It said that CMT can cause pain, chronic fatigue and deformities in the lower legs and feet, leading to balance problems and falls.
It is a progressive illness causing muscle weakness and wasting in the lower legs and hands, leading to problems like hammer toes, restricted mobility, and uncontrollable pain.
The hands and fingers are also affected, making tasks needing fine motor skills, such as fastening shoe laces, very difficult.
The charity said that around 23,000 people in the UK have CMT - which is named after the three scientists who discovered it.
CMT UK's chief operating officer, Karen Butcher said: "As a charity supporting people with CMT, it is our role to speak up on their behalf and help them with the challenges they face.
"In addition to this, we also offer advice and support to those who think they might have the condition, but haven't been diagnosed yet.
"Sometimes the symptoms aren't so obvious, but due to the fact that CMT affects the hands and feet, it could be they have trouble balancing, find they regularly trip or fall over and are constantly tired.
"For some women, a telling sign is that they can't wear high heel shoes due to high arches and hammer toes.
"Of course, while all of this could mean so many other things, if you have any of these symptoms then it would be a good idea to ask your GP about CMT. Early, accurate diagnosis can improve the lives of those with the condition as it can be managed more effectively.
"In addition, because CMT is genetic and there's a 50% chance it can be passed on from a parent to a child, then professional genetic counselling can also be received so the risks to the next generation can be learned."
:: To find out more visit www.cmt.org.uk or call 0800 6526316.