Photograph courtesy of Michele L. Hopkins
"No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos Syndrome." -Professor Rodney Grahame
"...until now." -Victoria Graham
who is affected by Ehlers-Danlos Syndrome?
The National Institute of Health (NIH) estimates that EDS affects about 1 in 5,000 people. This being said, it is also estimated that EDS is commonly under diagnosed and mis diagnosed, causing the estimated frequency to be skewed.
So, What is the problem?
A few things...
- Generally speaking, it often takes individuals anywhere from 1 year to 40 years to become diagnosed - despite the relatively high prevalence of occurrence
- Ehlers-Danlos patients are much different from individuals without the disease
- Many of our symptoms are different, often causing treatments to be different
- Ehlers-Danlos Syndrome is relatively unknown within the medical community and widely unheard of within general society
- The number of doctors who are proficient in dealing with Ehlers-Danlos Syndrome is limited
- Patients must encounter dozens of doctors before finding one who is able to properly treat them
- Many times patients must travel great distances to receive help
- There is, ultimately, no cure for EDS and there are very few treatments for the disease
What can be done?
Talk about it. Educate. Support.
In order to spark hope for patients with Ehlers-Danlos Syndrome, the first steps come in increasing advocacy and awareness about the disease; even simply discussing its existence, is beneficial and crucial.