‘I was at party with my daughter and was chatting with some other mums when I suddenly started feeling dizzy and clumsy,’ said Sally-Ann Livingston.
Soon afterwards, the 42-year-old, from Morton, near Bourne, went to see her GP.
“Until then, I thought I was the same as everyone else. I often felt exhausted, had joint pain and gut issues but I didn’t know they were symptoms of something else.
“I used to faint a lot as a child, and there were complications when I gave birth to my daughter, but I thought I was just unlucky.
“It was only recently that I finally received a diagnosis which made everything make sense.
“Looking back now, it’s obvious so many of the problems I have experienced throughout my life have been due to Ehlers-Danlos syndrome.”
It took around three years of tests and assessments by GPs, neurologists and rheumatologists before Ehlers-Danlos syndrome (EDS) was eventually diagnosed.
Sally-Ann – who also suffers from chronic fatigue syndrome, osteoarthritis, fibromyalgia and postural tachycardia syndrome – has a degree in design representation but had to quit jobs in architectural model-making and education because ill-health made it impossible to commit to full-time work.
Today, she runs two craft businesses from her home, selling jewellery and accessories online and via The Craft Centre in Bourne.
Sally-Ann wears supports on her knees, ankles and hands to protect her joints and undergoes regular physiotherapy sessions. She is on medication for her joint pain, tachycardia and anxiety.
Sally-Ann is supported by her husband, who works part-time as a home care assistant, and their seven-year-old daughter.
She said: “Despite everything I’m quite a positive person. I’m not going to let my health problems take over.”
Sally-Ann is determined to stay mobile. She uses a pair of ‘smart crutches’ when out walking but finds covering long-distances exhausting. She also has a wheelchair but finds it difficult to use on uneven pavements on the school run.
Sally-Ann added: “I used to have a second-hand mobility scooter which gave me a lot more independence.
“But sadly it didn’t make it through its last service and was beyond repair. I’d love to get a new one so I can be independent again and not so reliant on others.”
Sally-Ann has twice been turned down for Personal Independence Payments (PIP) and cannot currently afford to buy a new scooter so has launched a crowdfunding campaign to reach her £699 goal.
She said: “I have bad days and days which are still difficult but not so bad. I have tried to get the PIP assessors to understand the nature of my illness, but I currently get nothing. I’m hoping people will help with the appeal.”
EDS can affect people in different ways. For some the condition is relatively mild, while for others their symptoms can be disabling.
To make a donation towards Sally-Ann’s target, visit www.justgiving.com/crowdfunding/sally-ann-livingston