Natasha Lipman, a chronic illness blogger, was watching TV one morning, when something rankled her ire. The ITV show, This Morning, was doing a segment on whether or not children should be excused from physical education classes, and if parents needed to present a written note as to why their child should be excused.
A caller stated that her child had hypermobility and often came home from school exhausted and in pain after participating in PE. The host of the show incorrectly stated that hypermobility was another word for “double-jointedness.” That’s when Natasha blew a fuse.
Lipman has Ehlers-Danlos syndrome, which affects the connective tissues that support bones, skin, blood vessels, and other organs. The symptoms can be mild, like loose joints, or life-threatening.
In Lipman’s case, she has been living with chronic pain from EDS since the age of nine.
Growing up with an undiagnosed illness, she recalls doctors not believing her when she said she was in pain. She was denied pain medications, and she continually struggled, as she does today. Her memories include hours upon hours in physiology appointments, and coming in dead last while running cross-country, crying as she crossed the finish line.
There are some people who are truly double-jointed, like some gymnasts, for example, but that’s not what Ehlers-Danlos is.
Lipman, in an effort to spread awareness about the rare syndrome, wants ITV to apologize for transmitting misinformation, and she also wants the station to do a segment on Ehlers-Danlos.
Toward that end, she has begun a petition on Change.org. The main point Lipman is trying to make is there needs to be more awareness about the syndrome, and that people who have it should be taken seriously so they can receive appropriate medical treatment.
If you would like more information on Ehlers-Danlos syndrome, click here.
