Ehlers-Danlos syndrome (EDS) refers to a group of rare disorders which affect the connective tissues in the blood vessels, bones, skin, and other organs in the body. It’s caused by inherited defects in proteins such as collagen.
Some of the common symptoms associated with EDS are elastic and fragile skin, loose and unstable joints, a malfunctioning digestive tract, heart valve disease, varicose veins, and internal bleeding. Some of the more severe symptoms of the condition can be life-threatening.
EDS affects approximately 1 in every 2,000-5,000 people in the world. While there are some treatment options, there is no cure. Most of the therapies for EDS are focused on improving the patient’s quality of life and preventing further damage. Some of the treatments which may be prescribed include physical therapy, emotional therapy, pain medications, braces or surgery for damaged joints, and close monitoring of the cardiovascular system. Some patients may receive a nasal feeding tube or other medical devices such as a catheter that they must live with every day.
Devices like these can take a lot to get used to. A woman named Fiona Allan who struggled to adjust to these devices herself has come up with a way to support others who are dealing with this type of adjustment.
This is her story.
Fiona is a 28-year-old woman who lives in Glasgow, Scotland. She has Ehlers-Danlos syndrome. Her EDS caused her to spend a third of 2017 in the hospital connected to a nasal feeding tube. She found it very difficult to get used to. But through the whole ordeal she selflessly wasn’t thinking about her own struggles with the new device. Fiona spent her time wondering how children with EDS and other conditions adjust to the devices they have to wear. Then, she decided to do something to help them.
It started when her friend asked her to make a teddy bear for her daughter with autism. Fiona has always been crafty and readily accepted the challenge. It was after she made this bear that she had the idea to make bears which would look like the child they were going to. She began creating bears with feeding tubes, stomas, and other fittings.
It was posting these bears online that helped spread awareness of Fiona’s bears and from then on they were in high demand.
Fiona actually makes bears, bunnies, and other types of stuffed animals. They’re all equipped with the exact medical devices of their child owner. Fiona’s animals are very accurate because she uses real tubes and fittings that are donated from medical supply companies. These companies give her their out-of-date devices and she reuses them for her bears.
These bears not only help children adjust to their own devices, they help spread awareness and understanding to the children’s friends and siblings.
“Sick children often have a non-sick sibling. It helps them get used to it. They can play with them, touch them and even learn what parents do to manage and clean them.”
Siblings and friends can learn about the tubes safely as they can touch the tubes connected to the animal without harming the child.
Emily Cotton is a mom of a child who needs multiple tubes. Her daughter Darcey, who is only one, received a bunny from Fiona and Emily has nothing but positive words to say about how it has helped her daughter.
Darcey can pull on her bunny’s cords without fear of pulling out her own. Emily says it also helps distract her from her own devices and helps Darcey’s friends understand why she has the cords she has.
So far, Fiona has created 20 of these stuffed animals and she has no plans of stopping. She says its her way of paying it forward and she loves that she can have an impact on children going through the same things she herself has had to deal with.
You can read more about Fiona Allen and her bear creations here.