EDS: SPOKEN WORD

EDS stands for Ehlers Danlos Syndrome: it is a genetic connective tissue disease and disorder with no cure that literally affects the entire body, and is vastly misunderstood and undertreated. It causes endless symptoms that include excruciating pain, blood flow and autonomic issues, increased risk of rupture, aneurysms, and bleeding, seizures, subluxations and dislocations, extreme fatigue, digestive dysfunction, sleep problems, severe allergic responses, increased risk of anxiety disorders, and SO much more. It can take 10-20 years to get a diagnosis, and even then, treatment and understanding is limited.

I have been fighting for my life and my greatest accomplishment is getting this diagnosis within 1 year, not knowing if I ever would.

Personally I have a much rarer kind, basically 3 kinds in 1.

This month is HSD and EDS awareness month for the whole year, and I am so excited I can participate now knowing I have this condition and finally being diagnosed on Rare Disease Day of 2024. Once I am feeling better I am going to keep raising some serious H*LL.

People turn a blind eye, refuse to see what really can be going on, and how devastating and debilitating it can be. They stay in denial, stay in their own world, stay in their comfort zone. They put people with real conditions inside their own makeshift box and lock it up tight and leave us to die.

I am someone who somehow survived and found a way to break through, and now I plead for myself and others still living with this:

It is crucial that there be further research, education, and correct treatment for anyone affected by HSD and EDS.

It is crucial that there is a stop to the endless medical gaslighting, blaming, stigma, bias, and lack of care.

It is crucial that those in severe suffering due to the lack of access to proper care and treatment and who cannot do even more because of how debilitating it is, get the help they need to literally survive.

I am one of these people.

Moment after moment, day after day, night after night, for YEARS, I have lived with multiple types of psychological and physical suffering that is unabated and has only increased in intensity.

That is why I share all the parts of my journey: the torturous, the raw, and the beautiful, even though at times I would rather stay silent. I have suffered my entire life because of this disease and know others also have. I have been misunderstood, mistreated, not treated, blamed, laughed at, and close to death several times due to the lack of awareness and real help. There is hope, but only if we get the help we need.

I know I am called to be an advocate, but first I have to keep fighting for myself...so here is to us:
The rare ones, the f ing fighters, the ones who will not go down until every breath is used to warrant what we always needed, never got, yet always deserved.

(You can read my story in full, which was featured by the largest organization for EDS in the world, below:
https://www.instagram.com/p/C47EcujsNyH/)

- RKD

05-24-24