The “Parts” or “Pieces” to the Whole, that make up EDS!

So a week or so ago I said that I want to spend this year going through the list of EDS complications and deal with them on a medical/professional level. I have been living with them forever, and dealing with many of them with my children, but now I need to unpack this mess and deal with each individual “piece” in the context of EDS. As you can see by the list below, this is no small task, and each one will require digging through my ENORMOUS medical history to try and do as much of the background work as possible and know what we have already faced so that I can present a bit of a history instead of starting everything from scratch. But many will then require new appointments, new specialists, and a whole bunch of horrible retesting, new testing, unpacking etc, not to mention the maze of medical professionals who have never dealt with EDS before who are going to let their egos get in the way …

So I know that this journey is going to be HARD, that the list below is going to get longer before it gets shorter, and that we are going to keep hitting some dead ends. Part of me feels that after decades of dead ends I am not sure that I have the emotional or physical strength for any more, but I HAVE to do this! I will only have some wins if I keep pushing forward, and pushing forward means that I will have to face the dead ends, the endless hours of waiting rooms, not to mention the humiliations, the frustrations, the dollar and psychological costs, the negatives in order to find some positives! So I am not saying that I will accomplish ALL of this in 2016, but I hope to make a huge dent in this list and make some decent progress!

So here is the list that I will start unpacking from tomorrow:

As EDS typically affects the tendons and ligaments, joints, skin (inside and out), and blood vessels, and therefore many of the major organs, here are some of the major signs and symptoms…

(links at the bottom of the page for some of the sources of this information)

Musculoskeletal:

Cardiovascular

Other manifestations or complications

Skin

  • Fragile skin that tears easily
  • Easy bruising
  • Redundant skin folds
  • Allergies
  • Asthma
  • Oral Allergy Syndrome
  • Molluscoid pseudotumors, especially on pressure points
  • Subcutaneous spheroids
  • Livedo reticularis

 

Sources:

https://en.wikipedia.org/wiki/Ehlers–Danlos_syndrome

http://feetandankles.blogspot.co.za/2011/02/metatarsus-adductus.html

http://www.ednf.org/hypermobility-type

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