A teen has created a new website detailing what it’s like to grow up with Periodic Fever Syndrome (PFS).
When asked to design a “Personal Project” for a school assignment, the teen knew this was the perfect opportunity to spread more awareness about PFS and maybe even help other kids and families who are newly diagnosed or struggling with their condition.
One of the most important features of the teen’s site: a video giving tips about how to ease the pain of injections.
There are also some ideas about how to reduce the cost of uninsured medication and a detailed account of the teen’s own experiences living with PFS, as recorded in three stages:
- Where it all began (Age 0-5)
- Middle (Age 6 to 10)
- End (Age 11-13)
The next stage of the teen’s project will be to distribute cards and a poster with information about the new website at BC Children’s Hospital Rheumatology where kids and families attending their autoinflammatory disease clinic will see them.
We just know this project will have a huge impact in helping other kids, teens and families affected by PFS and other rheumatic conditions feel less alone. And we just love seeing kids helping other kids!
You can visit “PFS Help/Inspiration” here: http://pfshelp.wixsite.com/pfshelp
About Periodic Fever Syndrome
Periodic Fever Syndromes (PFS) represent a group of autoinflammatory diseases characterized by recurring episodes of fever and inflammation in the absence of infection. Fever syndromes typically occur before age five. Children will experience high fevers that last for three to six days and which reoccur every three to eight weeks.
Periodic fevers are often difficult to identify as symptoms can look like a common infection. Therefore many children suffer for several years before physicians recognize their real problem. Even with a diagnosis, there are so far no satisfying treatment guidelines and as a result the affected children are at significant risk for lifelong poor health and disability.
What Cassie and Friends is doing to help
Cassie and Friends has recently committed $365,000 in new research funding to help find safer and more effective treatments for children living with autoinflammatory conditions. This includes supporting the development of the CAN-Fever Autoinflammatory Registry at BC Children’s Hospital and co-funding a five-year Scholar Award to Dr. Kelly Brown of the BC Children’s Hospital Research Institute, in partnership with the Michael Smith Foundation for Health Research.
In 2016, Cassie and Friends also introduced a new, specialized autoinflammatory education/roundtable session at our annual Family Day and launched a private parent-led email group for families affected by autoinflammatory conditions.
Other stories about PFS in BC:
http://www.cbc.ca/news/canada/kamloops/nine-year-old-kamloops-boy-diagnosed-with-periodic-fever-syndrome-1.3722852
