Q: Does it hurt to stretch like that?
A: It may not when an EDSer is young, but every time we hyperextend our joints (extend our joints beyond the normal movement) we do damage. The older we get the more it starts hurting.
Q: Can you show me different pictures of EDS?
A: I have pictures up on the subtitles telling about each form of EDS.
Q: Do people with chronic pain just have a low tolerance for pain?
A: I can't answer for everyone, but my tolerance for pain is very high. I can walk around on a dislocated toe and not realize it sometimes. I've burnt myself, I've ripped my skin, and I've messed up joints without knowing it because my pain levels are so high. Most EDSers have a very high tolerance for pain because we are in pain all the time. I personally think that if a normal person were suddenly put into the shoes of an EDSer in extreme pain they would see what we deal with every day.
Q: Is EDS real?
A: Yes it is very real! They have genetic tests available for most types of EDS.
Q: Is EDS just being stretchy and dislocating joints?
A: EDS is way more than that. EDS can affect many or all systems in your body, regardless of your type. Also, a lot of people are cross-typed, meaning that they genetically have more than one type of EDS.
Q: Can you catch EDS?
A: No, you can't catch EDS. It is only passed down genetically. In my case it started with my mom & dad. They both had EDS....It is a good chance that my daughter or her 2 sons have it...
Q: What does it feel like to subluxate or dislocate a joint?
A: Painful. Weird. Scary. It gives me a feeling of helplessness, but each person is different. It is even weirder to put them back in. I am very careful...My biggest problems were my knee popping out of place. I finally had to have 2 total knee replacements. I am walking better, less pain & no popping out of place. All together I have had 12 surgeries because of EDS.
Q: Is EDS very common?
A: EDS is listed as a rare disease by NORD (National Organization for Rare Disorders). According to the Genetics Home Reference Guide to Ehlers Danlos Syndrome , EDS affects approximately 1 in 5,000 people worldwide.
Q: What do EDSers call themselves zebras?
A: In medical school, students are taught "When you hear hoof beat think, horses, not zebras." Since EDS is a rare disease, we need doctors to think of zebras when they hear hoof beats.