Brigit's Flame Week 1 - Instep
o/` "Tonight I gotta cut
(Chorus)
Loose, footloose
Kick off your Sunday shoes
Please, Louise
Pull me offa my knees
Jack, get back
C'mon before we crack
Lose your blues
Everybody cut footloose" o/`
-- Footloose" performed by Kenny Loggins
Some diseases and social ills have a 'face':
- "This is the face of hunger"
- "This is the face of HIV"
- "This is the face of cystic fibrosis"
- "This is the face of apathy."
My disease doesn't have a face, it has feet. Those are the feet of Ehlers-Danlos Syndrome. While not all EDS (some of us call ourselves "bendies" because of the joint hypermobility) patients have feet which look exactly like mine, the feet do tend to have similar characteristics. In fact, those feet are rapidly becoming the standard diagnostic 'face' for EDS when correct diagnosis is in doubt.
Note the fragile, almost translucent aspect of the skin with its many cracks, wrinkles, tears, and fissures. Since we "bendies" are missing or have a defective collagen factor, our skin isn't as strong as it should be and nowhere is this more apparent than our feet. The feet, as you can see, often have a wizened or aged appearance as well as a bright pink coloration. That coloration comes from being able to see so many capillaries running through the skin. Bendies are often missing several skin layers (most humans have seven, the typical EDS patient has three or less).
Behold the smooth, soft appearing bumps on the heels and sides of the feet! These are caused by fat cells extruding through the dermis. The correct medical term for them is 'pizogenic papules' but that's a mouthful; my family physician calls them benign fatty cysts and I just call them lumps. They're only visible when I stand on my feet or put partial weight on them, as I did when taking the photo. When I don't put weight on my feet, they disappear back into the skin. I guess you could consider them a special sort of fat hernia.
Look how level the soles of my feet are; I guess you could say you caught me literally flat footed. EDS patients often have little or no arch in the structure of their feet, a fact which contributes to dislocations of other joints such as ankles, knees, and hip while also producing debilitating back pain. I wear arch supports to prevent that, which isn't much fun but allows me to walk short distances without having to yell to a husband or companion, "Kick me, it's out again!" and having to wrench the offending body part back into position.
By now, you're probably wondering about the curiously curved and twisted toes. That's what happens when you can't get a physician to believe that EDS exists and he won't write the referral to a podiatrist or other specialist to have the joints shored up with braces. I've tripped or stumbled so many times when something further up the line dislocated that the toes get bent or broken. Eventually, ironically, the joint and tissue damage becomes so bad that the toes just fuse in whatever new position they're in most.
And now for the pièce de résistance of this mini freak show: how on earth do you walk on those things? The answer is rather simple: I don't, often or much. The ankles suffered the same fate as the toes so my left one is permanently fused at a forty-five degree angle to the floor; the right suffered less trauma and so has a little more flexibility but it doesn't meet the floor either. I spend five minutes before I can put my shoes on properly positioning my feet and then wrestling them into hiking boots. Why hiking boots? They provide some stability for the joints and they help push the feet back into their natural angle.
So...anyone want to race me? I promise to give you a head start!
(Chorus)
Loose, footloose
Kick off your Sunday shoes
Please, Louise
Pull me offa my knees
Jack, get back
C'mon before we crack
Lose your blues
Everybody cut footloose" o/`
-- Footloose" performed by Kenny Loggins
Some diseases and social ills have a 'face':
- "This is the face of hunger"
- "This is the face of HIV"
- "This is the face of cystic fibrosis"
- "This is the face of apathy."
My disease doesn't have a face, it has feet. Those are the feet of Ehlers-Danlos Syndrome. While not all EDS (some of us call ourselves "bendies" because of the joint hypermobility) patients have feet which look exactly like mine, the feet do tend to have similar characteristics. In fact, those feet are rapidly becoming the standard diagnostic 'face' for EDS when correct diagnosis is in doubt.
Note the fragile, almost translucent aspect of the skin with its many cracks, wrinkles, tears, and fissures. Since we "bendies" are missing or have a defective collagen factor, our skin isn't as strong as it should be and nowhere is this more apparent than our feet. The feet, as you can see, often have a wizened or aged appearance as well as a bright pink coloration. That coloration comes from being able to see so many capillaries running through the skin. Bendies are often missing several skin layers (most humans have seven, the typical EDS patient has three or less).
Behold the smooth, soft appearing bumps on the heels and sides of the feet! These are caused by fat cells extruding through the dermis. The correct medical term for them is 'pizogenic papules' but that's a mouthful; my family physician calls them benign fatty cysts and I just call them lumps. They're only visible when I stand on my feet or put partial weight on them, as I did when taking the photo. When I don't put weight on my feet, they disappear back into the skin. I guess you could consider them a special sort of fat hernia.
Look how level the soles of my feet are; I guess you could say you caught me literally flat footed. EDS patients often have little or no arch in the structure of their feet, a fact which contributes to dislocations of other joints such as ankles, knees, and hip while also producing debilitating back pain. I wear arch supports to prevent that, which isn't much fun but allows me to walk short distances without having to yell to a husband or companion, "Kick me, it's out again!" and having to wrench the offending body part back into position.
By now, you're probably wondering about the curiously curved and twisted toes. That's what happens when you can't get a physician to believe that EDS exists and he won't write the referral to a podiatrist or other specialist to have the joints shored up with braces. I've tripped or stumbled so many times when something further up the line dislocated that the toes get bent or broken. Eventually, ironically, the joint and tissue damage becomes so bad that the toes just fuse in whatever new position they're in most.
And now for the pièce de résistance of this mini freak show: how on earth do you walk on those things? The answer is rather simple: I don't, often or much. The ankles suffered the same fate as the toes so my left one is permanently fused at a forty-five degree angle to the floor; the right suffered less trauma and so has a little more flexibility but it doesn't meet the floor either. I spend five minutes before I can put my shoes on properly positioning my feet and then wrestling them into hiking boots. Why hiking boots? They provide some stability for the joints and they help push the feet back into their natural angle.
So...anyone want to race me? I promise to give you a head start!