A woman who had been treated for cerebral palsy for 30 years learned that she had been misdiagnosed and that her condition could be cured with a single pill.
Doctors told Jean Sharon Abbott, 38, from Plymouth, Minnesota, that she had spastic diplegia, a form of cerebral palsy, when she was four years old.
However, after 30 years of suffering from muscle spasms, weakness, near immobility, and being subjected to painful surgical procedures, Jean learned at the age of 33 that she in fact had dopa-responsive dystonia (DRD) — a rare, but treatable, muscle disorder. (Scroll down for the video.)
1. Jean Sharon Abbott is seen recovering from surgery when she was 12-years-old. The 38-year-old has since discovered she was misdiagnosed with spastic diplegia, a form of cerebral palsy.
When she was initially diagnosed with spastic diplegia, Jean was considered a textbook case, even though neither her MRIs nor CAT scans showed any of the disorder’s typical symptoms.
And as her neurologist was believed to be one of the best in the field, second opinions concurred with his conclusions.
Jean admitted she never questioned her original diagnosis, but accepted her physical struggles and concentrated on living her life to the best of her ability.
When she was 12-years-old, Jean underwent a “very painful” muscle transfer to keep her knees from knocking against each other when she walked.
2. Jean, who was once nearly immobile, completed a 10-mile hike with her husband (pictured) four months after she started taking her DRD medication known as L-Dopa.
The mother-of-three compared the pain she suffered to open heart surgery, but said she was glad that her parents encouraged her to undergo the procedure, which helped her a great deal.
Then in her late twenties, Jean had a pump implanted in her body to distribute the medicine she was taking. However, she ended up over-medicated and that is when she visited a specialist who would change her life forever.
The new doctor questioned Jean’s original diagnosis and sent her to another neurologist.
The new specialist discovered that Jean had actually been living with DRD and explained that most of her symptoms would either improve or completely disappear with a daily dose of a medication called L-Dopa.
3. Jean is pictured with her husband and their three children following her correct diagnosis of DRD.
4. Jean can be seen using trekking poles during one of her hikes.
Sure enough, it soon became clear that L-Dopa was working better than Jean could have ever hoped for.
She became stronger and her husband started working with her to increase her walking distance. Fourth months later, the couple celebrated their 10th wedding anniversary by traveling the 1,200-mile road around Lake Superior, where they had their honeymoon.
While Jean realizes that there are many things she can do now that were not possible until recently, she insists that she doesn’t have any regrets about receiving the right diagnosis so late in life.
She added that if she hadn’t been diagnosed with cerebral palsy, she might have chosen a different college and would never have met her husband and have three children with him.
5. The happy couple posed for a photo when Jean still believed she had spastic diplegia.
Five years after the correct diagnosis, Jean has now become an advocate for raising awareness for DRD, which is often misdiagnosed.
Eight months ago she decided to stop taking L-Dopa for a week and film herself walking, in order to help others recognize DRD’s symptoms.
Jean later published the footage on YouTube and has since received many emails from people who told her that her video helped them recognize DRD in either themselves or loved ones.
Jean is also blogging about her condition on her website.
6. Jean Sharon Abbott speaks about Dopa Responsive Dystonia.
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