Imagine having a disease so rare that it only affects one other person on earth—your sister. Kirstie and Catherine Fields, 18-year-old identical twins from Wales, are the only known sufferers of Fields Condition, a progressive muscle disorder that’s been named after them. It’s believed to be the world’s rarest disease.
Their disorder, which triggers more than 100 excruciating, uncontrollable muscle spasm a day, left the twins paralyzed and unable to talk until they received electronic speech machines for their birthday. There’s a “strong possibility” that their mysterious disease may cut their lives short, according to Wales Online.
Kirstie and Catherine have been using wheelchairs since they were 11 and lost their voices at 14. Yet the teens, who sport matching butterfly tattoos, have a surprisingly upbeat attitude and use their communication devices to tell jokes and enjoy girl talk.
Although there’s no cure in sight for the teens’ painful condition, on a recent TV documentary about their life, they told viewers, “Don’t feel sorry for us…No one lives forever. Be happy and smile.”
February 28 marks Rare Disease Day, dedicated to raising awareness of the nearly 8,000 known rare diseases that collectively affect more than 60 million people around the world. Because these conditions often stem from genetic problems, 75 percent of those battling them are kids, reports RareDiseaseDay.org.
For most of these diseases, there’s no cure and many lack effective treatments. Yet rare disorders are often chronic, progressive, disabling, or even life threatening. Tragically, 30 percent of patients afflicted with these conditions die before age five.
Here’s a look at some of the world’s rarest diseases:
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