This Woman Has an Inspiring Way to Raise EDS Awareness

The Importance of Visibility for Ehlers Danlos syndrome


Ehlers-Danlos syndrome (EDS) is incredibly diverse in its symptoms, and most of the time patients don’t have all of them at the same time.

Additionally, it’s a spectrum condition so it’s very rare for two individuals with the syndrome to look exactly alike. This can lead to a long delay in diagnosis. Doctors are typically focused on treating the specific symptoms their patients are displaying, as opposed to looking for overarching connections between them.

However, considering that EDS is so rare, it’s hard to blame them for not considering it as a possibility.

That being said, it still affects thousands of people in the United States alone. And it’s not a fun experience. It deserves attention, and it deserves treatment. Tania Tirraoro, author of the blog,

Tania Tirraoro, author of the blog, “A Life Not as Advertised”, has dedicated her life to creating awareness for the disorder.

She believes it’s important not only for doctors to be aware of the existence of EDS so they can consider it as a diagnosis, but it’s important for the medical community as a whole to understand. Since it is on such a spectrum, there’s no single drug that will treat the entire range of symptoms.

The research that is in progress for EDS isn’t terribly well funded either. Since it’s genetic, the best treatment will likely have to do with gene therapy or gene editing.

However, genetic study is expensive, highly regulated, and controversial in and of itself. Additionally, most of the diseases currently contemplating gene therapy as a potential treatment are considered more urgent to fund than EDS due to their life expectancy.

BUT this article isn’t supposed to be a downer.

The point is this: EDS needs more awareness, and YOU have the power to help. Here are some ways to get involved:

  • Contribute your own story on Patient Worthy by Sharing a Little or Sharing a Lot!
  • Be vocal to your doctor, friends, and strangers about your daily experiences living with EDS
  • Visit Tania’s website “Special Needs Jungle” to hear stories, information, and advice from parents of children living with the condition
  • Remember that you are capable of making a difference

Read more about the issue of EDS awareness on Tania’s blog post “The Enigma of Ehlers-Danlos Syndrome and Why It’s Vital to Make The #InvisibleVisible”.




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