What do I wish people knew about Ehlers-Danlos Syndromes?

1. They are more common than is diagnosed.

2. That doesn’t mean they are any less painful.

3. Different supports will be needed at different points of life.

4. Age has little to no bearing on intensity of symptoms.
In fact, some of the worst symptoms are felt during the intense growing periods of toddler and teenage years- when we are less likely to be listened to than at any other time in our lives.

5. Ehlers-Danlos Syndromes seem to be found equally amongst all sexes and genders (although many people with EDS find themselves identifying as a different gender than male or female).

6. Gaslighting and ignoring our pain and other symptoms is more damaging than is realized and can lead to decades of mental health issues as well as the worst outcome of those.

I posted a tip of the iceberg of what I want people to understand about Ehlers-Danlos to several social media sites early Sunday morning.

My posts into EDS support groups attracted comments that reminded me of several other things I would love people to know about Ehlers-Danlos Syndromes. So, allow me to continue with the above list:

7. No two people with Ehlers-Danlos Syndromes will present the same. Not even two of the same family with the same type of EDS. Every body is different and so is each brain. We perceive our symptoms differently even when they are similar.

8. No two days are the same. Our symptomology waxes and wanes, then peaks and plateaus. Fatigue can be a huge factor during the peaks, especially during puberty and young adolescence.

9. Never give fluoroquinolone antibiotics to anyone with a suspected connective tissue disorder. If there is anyone in your family with any type of connective tissue disorder, stay far away from the likes of Cipro, Levaquin and other fluoroquinolones.

10. Even though my symptoms may keep me from accepting invitations to events and to socialize, it doesn’t mean I don’t want to be invited. Please keep inviting me!

11. Barometric pressure seems to have significant impact on my level of ability. When low pressure systems pass through my area, my inflammation increases significantly and so does my pain level.

12. Cannabis helps control the pain so well that at least three states in the US that have medical cannabis laws have Ehlers-Danlos as qualifying conditions. There is a significant amount of research confirming our pain levels are extremely high.

I’m sure there are many other things I want people to understand about Ehlers-Danlos Syndromes, so I’ll continue to research. Next year my list may be much longer!