*I don't typically do this sort of thing, but with what seems like an impossible goal we're in desperate need of signatures*
Currently I am stubbornly fighting to stave off disability for as long as possible, but my future, and they futures of my fellow EDSers is grim. I have a genetic connective tissue disease called Ehlers Danlos Syndrome (EDS), which has led to two additional systemic illnesses that are also highly debilitating.
Evidence suggests that EDS may be connected to Autism, as there seems to be a higher number of Autistics with EDS.
With Ehlers Danlos our joints, ligaments, skin, tendons, organs, vessels/veins, are lacking the necessary collagen. This makes them too stretchy and leads to a multitude of problems. For instance, because my joints are so loose they all dislocate and partially dislocate constantly. As you might imagine, this causes a lot of damage and pain from a very early age. The joint problems are only a small part of the issue that many of us face, but they alone can be debilitating.
To give you an idea and hopefully persuade you to support this petition:
On a daily bases (in addition to the widespread joint pain/dislocations) I endure frequent drops in blood pressure which leads to fainting and tachycardia (Dysautonomia- pots),
daily migraines with aura,
trouble swallowing,
reflux,
severe GI pain,
abdominal swelling,
nerve pain,
muscle spasms,
dizziness,
inability to regulate body temperature (can't warm up or cool down as needed which causes fainting and flares in Mast Cell symptoms),
severe flushing which feels like having a really high fever (chills, burning, achy, sore throat, etc)
bladder pain
blood pooling (legs and hands turn purple; it's painful)
extreme muscle weakness for a few hours after waking up (POTS)
poor wound healing
fragile veins and skin (leads to easy bruising and skin tearing)
bone pain
And too much more to list
Basically imagine the sickest you've ever felt, triple it, and now imagine that it never goes away
We are petitioning the U.S. government to recognize Ehlers Danlos as a disability, hopefully making it easier on the patients trying to obtain the financial help they need. Since it's considered a rare disease, it's quite hard to get the help we need. Please sign the petition here: https://petitions.whitehouse.gov/petition/recognize-ehler-danlos-syndrome-eds-disability
For more information on EDS:
Video about EDS from a fellow Autistic
Ehlers Danlos National Foundation Website
Article written by the parent of a patient
Thank you for taking the time to read this long post!
09 Sep 2015, 1:36 pm
