Global Genes tells us that Bonnie Wheeler spent the first 40 years of her life enduring the symptoms of undiagnosed Ehlers-Danlos syndrome, which is a grouping of connective tissue disorders.
In the most common form, hypermobility of the joints—meaning joints can easily become dislocated—and skin elasticity are the hallmark symptoms, which Bonnie suffered from, along with repeated sprains, constant bruising, and varicose veins. The most serious form of EDS affects the vascular system and can cause sudden aneurysms.
Ehlers-Danlos is classified into six major types: classical, hypermobility, vascular, kyphoscoliosis, arthrochalasia, and dermatosparaxis.
The types are distinguished by their specific genetic causes, and of course, by signs and symptoms.
Bonnie was often compared to her mother, who apparently also had undiagnosed EDS and tragically died at the age of 52 from a brain aneurysm. Bonnie was devastated by her loss and worried over every headache she had, that she may share her mother’s fate. Doctors, however, reassured her that she was fine. Then again, those same doctors overlooked her frequent joint dislocations, and even went so far as to tell her it was normal to cough up blood.
When Bonnie became the mother to two beautiful children, she worried even more.
Her youngest son seemed to have the same joint issues and bruising. He was small, and his skin was fragile. Although she brought up his condition at every pediatric appointment, doctors kept telling her everything was okay.
And then, at the age of 40, her aorta tore, and during the surgery to repair it, her iliac artery ruptured.
A scan revealed many other aneurysms in her body. It was then that the doctors reviewed her medical history, along with her mother’s. With one blood test, they diagnosed her with EDS.
Today, Bonnie works to raise awareness about EDS so that others can be diagnosed more quickly. She hopes that, one day, there will be effective treatments and finally a cure.
