Out of Place: Ehlers Danlos, Chronic Kidney Disease and Accidental Foot in Mouth

I have a connective tissue condition, Ehlers Danlos; they say the result it is defective collagen. For me, this impacts my vascular system, major organs and includes hypermobile’ joints. This why I can move in ways that look photoshopped and yet if I am seated for more than 15 minutes I have to crawl and grab onto things to stand. As a child, I was described with a nervous fidget; stillness is painful. My description of Ehlers is typically followed by, you don’t look sick. I am not sickly looking (most times) and I don’t consider it sick, but a condition. However, I often limp or grimace when doing certain movements and rather than give an explanation when asked, I will say I’m tired rather than explain.

It’s human nature to want to help, to empathize. People, with no previous knowledge of the condition other than my 15 second spiel offer solutions. I mean yes, it is possible, but not probable you are  a brilliant diagnostician that will offer a treatment no one has concluded before. 1 Oh, your  body does not produce collagen, take collagen supplement. Y’all, you know how to quickly produce kidney stones? Take collagen supplements your body cannot process that’s how.

Look, I am guilty!!! I have said some dumb stuff with my “ideas” too. I have since learned to google things like lupus, fibromyalgia, carpal tunnel, etc and under stood the basics and while I have no new news to help the impacted, I have managed to over come foot in mouth most of the time. If you meet my brother now, you probably have no idea he has kidney failure. A friend in the health field met him and could spot a tell tale sign. But anyone else, without knowing him before, would probably revert to the, he does’t look sick. My brother has Chronic Kidney Disease and needs a kidney now. The average wait time for an organ is 3 to 5 years.

In 2021, Ramiro Gonzales, sentenced to be executed for his crimes was denied the opportunity to donate a kidney before his death. Mr Gonzales had a rare blood type and wanted to donate his organs to atone for the life he had taken. However, Texas Governor Greg Abbot denied the request to allow Mr. Gonzales to donate. My “condition,” while my form is rare, is manageable. For people awaiting an organ transplant, not so much. There are 100,000 people awaiting organ transplant in the US. For comparison, the largest football stadiums hold 80,000 people. In the US, prisoners are not allowed to donate organs. Consider the morals and ethics questions involved with organ donations from the incarcerated. What is a good policy?

1 While I prefer “condition” to illness, this is a framework to use and adjust as needed.

Is it okay if I ask you about your illness?

What is it like living with your illness?

What would be helpful for me to know and learn about your illness?

What do most people not know or get wrong about your illness?

How can I support you?

5 Questions to Ask the Chronically Ill Person in Your Life (And 5 Questions To Avoid)

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