Learn More about the condition we live with; Ehlers-Danlos Syndrome type III.
http://www.EDNF.org - National Website for Ehlers-Danlos Syndrome National Foundation
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ - Spoon Theory (Life with the Chronically Ill)
http://www.zebradogblog.com - Zebra Dog Blog - A blog about Life with EDS & our EDS Service Dog
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ - Spoon Theory (Life with the Chronically Ill)
http://www.zebradogblog.com - Zebra Dog Blog - A blog about Life with EDS & our EDS Service Dog
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What is EDS (Ehlers-Danlos Syndrome?)
Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body. People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. We often suffer with chronic pain, frequent joint dislocations (and subluxations, where they shift out of place but not as completely as a dislocation). |
We (Kristie & Kaedin) have EDS Type-3, also known as Hyper-Mobility Type. This is arguably the most "common" type of EDS, not that having EDS is common at all. It is believed by some researches and many of us who suffer from EDS, that having EDS isn't actually as rare as it was once thought to be. It's entirely possible that due to the difficulty of diagnosing EDS, or possibly because of the wide range of ways that this disorder affects people (not everyone who has EDS is negatively affected by it) and the extremity by which people who are affected experience symptoms -by comparison, it's about as wide as the range that comes along with Autism... there are simply SO MANY symptoms, and such a wide variety of extremes, that it is absolutely possible that FAR more people have EDS than have ever, or will ever be diagnosed with it. Many people probably live with EDS their entire lifetime and suffer no ill-effects and are never diagnosed, while many others, sadly, may live very painful tormented existences and never get an answer for their pain.
Symptoms related to Type III Ehlers-Danlos Syndrome (Hyper-Mobility Type)
- Joint hyper-mobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; What does that mean?
Joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis. I have had arthritis in the worst of my joints since I was 14 years old (started with my knees). Now at age 34, I have arthritic change in my lower back, hip, both knees, and my fingers. I experience between ten and thirty dislocations and subluxations of my joints on any given day - often while doing something as simple as laying flat on my back and sleeping or taking a deep breath. It takes VERY little pressure or movement to cause a dislocation - simply the act of holding my cell phone has caused my wrist to dislocate, and any use of my fingers causes dislocations.
Remember - if you dislocated a knee or shoulder, it would likely require a trip to the ER, pain medication, several days off from work or school to rest, a sling or brace and follow up exams and more.
Just because our dislocations happen much more frequently does not mean that they are any less serious or painful that a dislocation your average person would experience. So yes, I may be able to manipulate the joint back into it's place, but that doesn't mean that it's any less serious or less painful. Those of us with joints that frequently dislocate or sublux simply have the experience and to work the joint back into place- however- just the act of putting the joint back in does not mean that we don't suffer equally, if not worse, with the pain of that, and every subsequent dislocation.
Each time a joint comes out of place (from a toe, to a hip)- it causes a great deal of pain, swelling, tenderness, muscle spasms and tight, sore stabbing pains- It often causes longer-lasting problems including repeat-dislocations within minutes or hours of the first one. Many of us find that once a joint dislocates, we will then deal with that dislocation occurring on a regular basis in the future. Some joints are worse than others - but that can change. For years I never suffered any issues with my elbows or left shoulder, but within the last six months, I've started experiencing dislocations of my left shoulder.
- Skin; Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily. We often suffer from severe scarring from even minor injuries (I have very visible purple scars from every mosquito bite I suffered as a child); We often have slow and poor wound healing and it's not uncommon for our pale, transparent skin to be covered in bruises just from day-to-day living. We often have NO idea how we got even the most purple and yellow bruises, because it doesn't take any significant pressure to cause them! I bruise often in very severe ways that I can't even explain or remember what caused the bruise. These bruises can take weeks to heel, and often my legs are completely covered, even though I can't recall any specific reason for the bruises. Also, scars tend to heal slowly and turn a purple-ish or white color and stay visible for a much longer time than would on an average healthy person. For example, I experiences a dog bite that punctured my forearm almost a year ago - a single tooth barely punctured the skin and the bite did not become infected. What is strange is that the mark is bright purple and very visible - even though it healed while being treated with antibiotics and topical ointments.
- Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hyper-mobility Type). This pain can be stabbing, throbbing, sharp, or dull, aching and can mimic nerve pain which feels like a body part that's fallen asleep - tingly, pins & needles, hot burning pain, or electrical-like shocking pain. Any way it occurs - pain sucks, and is a normal way of life for those of us living with EDS.
- Tooth disintegration, wearing away of enamel and gum disease. Also, it's common to have a high pallet and crowded teeth. On top of all of these dental issues, we deal with the fact that many EDSers have VERY little help from local anestetics, which means that most dental work is done with very little numbing available from things like Novocain or other topical anesthetics. In November 2015, I finally accepted my fate and gave up - I had ALL of my molars pulled to stop the pain from constantly breaking teeth below the gum-line. I'm in the process of getting partial plates as I've been unable to chew solid food for more than five months with no back teeth.
(According to EDNF.org: "There are numerous dental problems that may occur: cross-bite, narrow palate, cysts, peg, discolored teeth, jaw pain and clicking, periodontal and needing braces (i.e., orthodontics). There was a study on the prevalence of oral problems reported among a large group of adults with in the EDS group who had daily pain in the masticatory muscles. The study suggested that a decline in psychological well-being was also more common in the EDS group. It is important that dental practitioners should be aware of the oral problems associated with EDS and the impact the disease has on quality of life."
- Insomia, trouble falling asleep or trouble staying asleep, often referred to as "Painsomnia". This is often attributed to dislocations and pain that occur when I move in my sleep (I frequently dislocate my right hip as well as toes in both feet while I'm sleeping - the pain is so severe it wakes me up. I also suffer from muscle spasms in my back or in the area of recent dislocations - for example, in my pelvis, groin and upper leg after a hip dislocation.
- Muscle Spasms - Often dislocations will trigger spasms - for me, most of those occur in my mid and low-back which if left to persist will turn into deep painful knots. These muscle spasms can span the range from "fluttering" spasms that occur in my hand, thigh, and eyelids most often - to deep spasms that are visibly noticeable and give the appearance of restless leg syndrome. At time, muscle spasms are so sudden and painful that I will literally appear to "jump" when the spasm strikes. These spasms are often limited in duration but can feel extremely sharp and strong (similar to a charlie-horse).
- Brain-Fog, short-term memory loss, ADHD and symptoms of Sensory Perceptive Disorder - EDS doesn't just affect your body - our brains are affected too. It's easy to imagine how living with unending chronic pain, an endless series of unexpected injuries and constantly having trouble sleeping or getting proper helpful rest - but there's more to it than that. Many of us (myself included) suffer with severe issues with sensitivities to light and sound - for some of us, we suffer migrane-like headaches, for others they manifest more like severe phobias. I'm personally severely claustrophobic (MRIs- no good!), and emetaphobic (I have a severe fear of anything to do with vomit). I have a severe intolerance for certain sounds, and I have a terrible fear of coming into contact with certain textures (I have a horrible fear of cotton balls). For some EDSers, this presents strongly enough that they fit onto the Autism spectrum, for others (like myself and Kaedin)- it's more of an annoyance, living with being sensitive to things that many people can't understand. You'll often see Kaedin with his hands pressed over his ears. An example of things that trigger auditory sensitivities for us? Whistling, high-pitched noises, Kaedin can't stand the voices from the cartoon Alvin and the Chipmunks, and Kristie can't stand the voice of Sean Connery. It's very random, and we have no control over these things - but it's not just "annoying" - these sensitivities can actually trigger panic-attack like severe reactions.
- In 2007 I was diagnosed with Crohn's disease after a series of hospitalizations, various blood tests and a colonoscopy. For the better part of my adult life, I have had serious problems digesting certain foods and with terribly unpleasant cramping, abdominal pain, frequent bouts of diarrhea, horrible abdominal pain and spasming, an inability to digest a number of foods and severe reactions (usually bloating, pain and spasms) from certain foods such as uncooked veggies, broccoli, any kind of lettuce/salad, soups, any fried foods and much more. By early 2009 with the help of Remicade infusions, I was in remission and have been since. While I still have a long list of "Can't Eat" foods - I have been left to wonder if I actually have crohn's disease, or if because this diagnosis was documented well before I was diagnosed with Ehlers-Danlos syndrome, that these digestive system issues could be related to EDS. Many people who live with EDS have similar symptoms to IBS / IBD. I am checked yearly by an endoscopy and colonoscopy to continue to monitor my digestive health.
-I have a dysfunctional esophageal sphincter - which basically means that stomach acid backs up my esophagus and causes heart burn, sore throat, swelling, a "lump in my throat" feeling that often wont go away for days at a time. This is also known as GERD. This is all very common for EDSers. Because of the Crohns Disease and GERD, I have to receive colonoscopies and endoscopes every other year, more often if either is very active and troublesome.
-Severe Chronic Fatigue - Unfortunately, another product of living with chronic pain and intermitant insomnia, is life with severe and sudden-onset fatigue. I'm not talking about the kind of mid-day tired that a healthy person feels. I'm talking about being so wiped out by making yourself a sandwich, or taking a shower, that you're physically unable to do anything BUT lie down and attempt to sleep. Many times, this rest isn't refreshing or comforting - it just leaves the person MORE tired, but it's a very crucial part of living with chronic illness. When you are SO tired after taking a shower that you don't have the energy to get dressed, it's understandable why we are unable to work, even if we WEREN'T dealing with so many of the above issues!
Several conditions tend to co-exist with EDS:
POTS (postural orthostatic tachycardia syndrome) - Simply put, connective tissue abnormally allows excessive amounts of blood to pool in these patient's lower limbs when they stand - so changing positons- sitting to standing, laying down to sitting up, or other external instances such as hot weather or high amounts of stress can trigger an attack. When a person with POTS feels symptoms, it can range from slight dizziness, to complete syncope - where a person can black out and collapse. For me - this tends to manifest when I am tired, over-heated or when I shower or swim and the water or air-temperature is uncomfortably warm. The only way to avoid the dizzness and nausea is to sit still, to remain in one position (typically a propped-up or supported-back position) in a room which air conditioning that is under 68 degrees. In any environment where I am warm or tired, I will experience a range of POTS symptoms. (According to EDNF.org: "Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. POTS can be a difficult disorder to detect and understand."
"Interstitial Cystitis" which causes frequent UTI's and bladder infections, kidney infections, pelvic floor dysfunction, abdominal and pelvic pain, bladder pain, frequent urination, painful urination (burning), an inability to fully empty my bladder. Another problem is urgency (sometimes I feel like I have to RUN to the bathroom). Interstitial Cystitis was one of the mystery problems that took the longest to explain and solve because several tests rules out other more common problems - I have never had kidney stones, although these are fairly common with people with EDS. Unfortunately, I've suffered from a life-long debilitating fear of germs, and have serious issues using public restrooms.
Reynaud's Syndrome: Reynaud's is a condition that causes your hands, feet, toes and fingers to sometimes turn white, go numb or burn with a tingly-electrical like pain. Sometimes only two fingers on my hand will become numb - sometimes it's only a single finger tip, other times one whole foot, or both hands will be ice-cold. It's typically believed to be caused by restricted blood flow - but it makes very little sense because it is brought on by stress, the temperature of the environment (both extremes- heat and cold) - and sometimes there's no explainable reason whatsoever. As I type this paragraph, my right pointer finger is ICE cold and bluish white - while both feet and the rest of both hands are warm and a normal temperature. Typically the numbness, pain and cold-feeling can be turned around by putting the appendage in running warm water, wrapping the body part in a heating pad, or moving and manipulating the affected area(s).
Mast Cell Activation Disorder: Often called MCAD, or Mast-Cell for short - Mast Cell Activation Disorder is another of the "fun" commonly co-existing disorders that happen in conjunction with EDS Type-3. It's like being allergic to EVERYTHING - our bodies basically spaz-out in reaction to things as if we were allergic to them. In my lifetime, I've had life-threatening reactions to black pepper, capcasin (the spicy substance produced by peppers and the main ingredient in pepper spray) - I've also reacted to Tide detergent, carpet cleaner, Teriyaki sauce, and much more mundane things - like rain water, water from a shower - these have all triggered rashes, throat swelling, and hives. Not fun. Many people with MCAD, have to take multiple anti-histamine medications as well as carrying an epi-pin for severe and sudden onset of symptoms. It can cause reactions similar to asthma, or skin-reactions similar to psoriasis - as well as triggering things like acne, and keratosis pilaris (keratin plugs that block up pores and are hard to clear out - causing red bumps and scarring).
- Joint hyper-mobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; What does that mean?
Joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis. I have had arthritis in the worst of my joints since I was 14 years old (started with my knees). Now at age 34, I have arthritic change in my lower back, hip, both knees, and my fingers. I experience between ten and thirty dislocations and subluxations of my joints on any given day - often while doing something as simple as laying flat on my back and sleeping or taking a deep breath. It takes VERY little pressure or movement to cause a dislocation - simply the act of holding my cell phone has caused my wrist to dislocate, and any use of my fingers causes dislocations.
Remember - if you dislocated a knee or shoulder, it would likely require a trip to the ER, pain medication, several days off from work or school to rest, a sling or brace and follow up exams and more.
Just because our dislocations happen much more frequently does not mean that they are any less serious or painful that a dislocation your average person would experience. So yes, I may be able to manipulate the joint back into it's place, but that doesn't mean that it's any less serious or less painful. Those of us with joints that frequently dislocate or sublux simply have the experience and to work the joint back into place- however- just the act of putting the joint back in does not mean that we don't suffer equally, if not worse, with the pain of that, and every subsequent dislocation.
Each time a joint comes out of place (from a toe, to a hip)- it causes a great deal of pain, swelling, tenderness, muscle spasms and tight, sore stabbing pains- It often causes longer-lasting problems including repeat-dislocations within minutes or hours of the first one. Many of us find that once a joint dislocates, we will then deal with that dislocation occurring on a regular basis in the future. Some joints are worse than others - but that can change. For years I never suffered any issues with my elbows or left shoulder, but within the last six months, I've started experiencing dislocations of my left shoulder.
- Skin; Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily. We often suffer from severe scarring from even minor injuries (I have very visible purple scars from every mosquito bite I suffered as a child); We often have slow and poor wound healing and it's not uncommon for our pale, transparent skin to be covered in bruises just from day-to-day living. We often have NO idea how we got even the most purple and yellow bruises, because it doesn't take any significant pressure to cause them! I bruise often in very severe ways that I can't even explain or remember what caused the bruise. These bruises can take weeks to heel, and often my legs are completely covered, even though I can't recall any specific reason for the bruises. Also, scars tend to heal slowly and turn a purple-ish or white color and stay visible for a much longer time than would on an average healthy person. For example, I experiences a dog bite that punctured my forearm almost a year ago - a single tooth barely punctured the skin and the bite did not become infected. What is strange is that the mark is bright purple and very visible - even though it healed while being treated with antibiotics and topical ointments.
- Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hyper-mobility Type). This pain can be stabbing, throbbing, sharp, or dull, aching and can mimic nerve pain which feels like a body part that's fallen asleep - tingly, pins & needles, hot burning pain, or electrical-like shocking pain. Any way it occurs - pain sucks, and is a normal way of life for those of us living with EDS.
- Tooth disintegration, wearing away of enamel and gum disease. Also, it's common to have a high pallet and crowded teeth. On top of all of these dental issues, we deal with the fact that many EDSers have VERY little help from local anestetics, which means that most dental work is done with very little numbing available from things like Novocain or other topical anesthetics. In November 2015, I finally accepted my fate and gave up - I had ALL of my molars pulled to stop the pain from constantly breaking teeth below the gum-line. I'm in the process of getting partial plates as I've been unable to chew solid food for more than five months with no back teeth.
(According to EDNF.org: "There are numerous dental problems that may occur: cross-bite, narrow palate, cysts, peg, discolored teeth, jaw pain and clicking, periodontal and needing braces (i.e., orthodontics). There was a study on the prevalence of oral problems reported among a large group of adults with in the EDS group who had daily pain in the masticatory muscles. The study suggested that a decline in psychological well-being was also more common in the EDS group. It is important that dental practitioners should be aware of the oral problems associated with EDS and the impact the disease has on quality of life."
- Insomia, trouble falling asleep or trouble staying asleep, often referred to as "Painsomnia". This is often attributed to dislocations and pain that occur when I move in my sleep (I frequently dislocate my right hip as well as toes in both feet while I'm sleeping - the pain is so severe it wakes me up. I also suffer from muscle spasms in my back or in the area of recent dislocations - for example, in my pelvis, groin and upper leg after a hip dislocation.
- Muscle Spasms - Often dislocations will trigger spasms - for me, most of those occur in my mid and low-back which if left to persist will turn into deep painful knots. These muscle spasms can span the range from "fluttering" spasms that occur in my hand, thigh, and eyelids most often - to deep spasms that are visibly noticeable and give the appearance of restless leg syndrome. At time, muscle spasms are so sudden and painful that I will literally appear to "jump" when the spasm strikes. These spasms are often limited in duration but can feel extremely sharp and strong (similar to a charlie-horse).
- Brain-Fog, short-term memory loss, ADHD and symptoms of Sensory Perceptive Disorder - EDS doesn't just affect your body - our brains are affected too. It's easy to imagine how living with unending chronic pain, an endless series of unexpected injuries and constantly having trouble sleeping or getting proper helpful rest - but there's more to it than that. Many of us (myself included) suffer with severe issues with sensitivities to light and sound - for some of us, we suffer migrane-like headaches, for others they manifest more like severe phobias. I'm personally severely claustrophobic (MRIs- no good!), and emetaphobic (I have a severe fear of anything to do with vomit). I have a severe intolerance for certain sounds, and I have a terrible fear of coming into contact with certain textures (I have a horrible fear of cotton balls). For some EDSers, this presents strongly enough that they fit onto the Autism spectrum, for others (like myself and Kaedin)- it's more of an annoyance, living with being sensitive to things that many people can't understand. You'll often see Kaedin with his hands pressed over his ears. An example of things that trigger auditory sensitivities for us? Whistling, high-pitched noises, Kaedin can't stand the voices from the cartoon Alvin and the Chipmunks, and Kristie can't stand the voice of Sean Connery. It's very random, and we have no control over these things - but it's not just "annoying" - these sensitivities can actually trigger panic-attack like severe reactions.
- In 2007 I was diagnosed with Crohn's disease after a series of hospitalizations, various blood tests and a colonoscopy. For the better part of my adult life, I have had serious problems digesting certain foods and with terribly unpleasant cramping, abdominal pain, frequent bouts of diarrhea, horrible abdominal pain and spasming, an inability to digest a number of foods and severe reactions (usually bloating, pain and spasms) from certain foods such as uncooked veggies, broccoli, any kind of lettuce/salad, soups, any fried foods and much more. By early 2009 with the help of Remicade infusions, I was in remission and have been since. While I still have a long list of "Can't Eat" foods - I have been left to wonder if I actually have crohn's disease, or if because this diagnosis was documented well before I was diagnosed with Ehlers-Danlos syndrome, that these digestive system issues could be related to EDS. Many people who live with EDS have similar symptoms to IBS / IBD. I am checked yearly by an endoscopy and colonoscopy to continue to monitor my digestive health.
-I have a dysfunctional esophageal sphincter - which basically means that stomach acid backs up my esophagus and causes heart burn, sore throat, swelling, a "lump in my throat" feeling that often wont go away for days at a time. This is also known as GERD. This is all very common for EDSers. Because of the Crohns Disease and GERD, I have to receive colonoscopies and endoscopes every other year, more often if either is very active and troublesome.
-Severe Chronic Fatigue - Unfortunately, another product of living with chronic pain and intermitant insomnia, is life with severe and sudden-onset fatigue. I'm not talking about the kind of mid-day tired that a healthy person feels. I'm talking about being so wiped out by making yourself a sandwich, or taking a shower, that you're physically unable to do anything BUT lie down and attempt to sleep. Many times, this rest isn't refreshing or comforting - it just leaves the person MORE tired, but it's a very crucial part of living with chronic illness. When you are SO tired after taking a shower that you don't have the energy to get dressed, it's understandable why we are unable to work, even if we WEREN'T dealing with so many of the above issues!
Several conditions tend to co-exist with EDS:
POTS (postural orthostatic tachycardia syndrome) - Simply put, connective tissue abnormally allows excessive amounts of blood to pool in these patient's lower limbs when they stand - so changing positons- sitting to standing, laying down to sitting up, or other external instances such as hot weather or high amounts of stress can trigger an attack. When a person with POTS feels symptoms, it can range from slight dizziness, to complete syncope - where a person can black out and collapse. For me - this tends to manifest when I am tired, over-heated or when I shower or swim and the water or air-temperature is uncomfortably warm. The only way to avoid the dizzness and nausea is to sit still, to remain in one position (typically a propped-up or supported-back position) in a room which air conditioning that is under 68 degrees. In any environment where I am warm or tired, I will experience a range of POTS symptoms. (According to EDNF.org: "Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. POTS can be a difficult disorder to detect and understand."
"Interstitial Cystitis" which causes frequent UTI's and bladder infections, kidney infections, pelvic floor dysfunction, abdominal and pelvic pain, bladder pain, frequent urination, painful urination (burning), an inability to fully empty my bladder. Another problem is urgency (sometimes I feel like I have to RUN to the bathroom). Interstitial Cystitis was one of the mystery problems that took the longest to explain and solve because several tests rules out other more common problems - I have never had kidney stones, although these are fairly common with people with EDS. Unfortunately, I've suffered from a life-long debilitating fear of germs, and have serious issues using public restrooms.
Reynaud's Syndrome: Reynaud's is a condition that causes your hands, feet, toes and fingers to sometimes turn white, go numb or burn with a tingly-electrical like pain. Sometimes only two fingers on my hand will become numb - sometimes it's only a single finger tip, other times one whole foot, or both hands will be ice-cold. It's typically believed to be caused by restricted blood flow - but it makes very little sense because it is brought on by stress, the temperature of the environment (both extremes- heat and cold) - and sometimes there's no explainable reason whatsoever. As I type this paragraph, my right pointer finger is ICE cold and bluish white - while both feet and the rest of both hands are warm and a normal temperature. Typically the numbness, pain and cold-feeling can be turned around by putting the appendage in running warm water, wrapping the body part in a heating pad, or moving and manipulating the affected area(s).
Mast Cell Activation Disorder: Often called MCAD, or Mast-Cell for short - Mast Cell Activation Disorder is another of the "fun" commonly co-existing disorders that happen in conjunction with EDS Type-3. It's like being allergic to EVERYTHING - our bodies basically spaz-out in reaction to things as if we were allergic to them. In my lifetime, I've had life-threatening reactions to black pepper, capcasin (the spicy substance produced by peppers and the main ingredient in pepper spray) - I've also reacted to Tide detergent, carpet cleaner, Teriyaki sauce, and much more mundane things - like rain water, water from a shower - these have all triggered rashes, throat swelling, and hives. Not fun. Many people with MCAD, have to take multiple anti-histamine medications as well as carrying an epi-pin for severe and sudden onset of symptoms. It can cause reactions similar to asthma, or skin-reactions similar to psoriasis - as well as triggering things like acne, and keratosis pilaris (keratin plugs that block up pores and are hard to clear out - causing red bumps and scarring).