EDS, also known as Ehlers-Danlos syndrome, is a rare disorder that affects connective tissues. There is a variety of classifications for EDS, and although cases of patients with EDS are beginning to become more heard of recently, it is still a disease that is not as well-known to most people. Thankfully, one way EDS awareness is being spread worldwide is by the helpful use of a popular connecting method that us humans use everyday – technology. It is being talked about everywhere, from online news articles to television shows, and it is only advancing from here.
A few years ago on a Freeform television talk show called ‘Katie’, two couples were being interviewed after being accused of abusing their child. Strange and unexplained bruises and injuries were appearing throughout the child’s body, and after some time the couple took their child in for examination, only to later learn that their child would be diagnosed with EDS. By having this segment on the show, more people were able to learn about a few common symptoms of EDS, such as easily bruising of the skin or unexplained rupturing of organs, which could help families and friends identify EDS traits and quickly seek the medical treatment they need.
Besides the voices of EDS being heard through the usage of broadcasted television shows, many other feeble voices have taken on having their stories be shared through online news articles. Jessica Kill, a mother of two, hopes her courageous story of battling EDS will bring awareness as it spreads nationwide. In 3 months, she is looking to raise $150k to afford the specialized surgery she needs, which is only available in the USA, or she will eventually become completely paralyzed.
At Boston College, one particular student who has been diagnosed with EDS is hoping to change the way her college accommodates disabilities for the better. After the college has failed to respond to concerns of the Stokes Amphitheater lacking ramps and railings to help those with disabilities, Amanda Melvin spoke about her frustrations, saying that the university “has lacked to acknowledge her disability”. In the interview, she stated that she has trouble getting up and down the stairs, especially since they are steep and her medical condition makes it very difficult.
As technology advances and awareness for EDS is spreading more and more each year, it is only a matter of time until more people will be educated about this rare condition. Not only will they know about its symptoms and classifications, but they will have a chance to become more involved with helping to spread awareness, as well as helping to find a cure.
If you have recently read any great articles or watched featured stories relating to EDS, please feel free to share below in the blog’s comments section!