EDS aka Ehlers Danlos Syndrome
Cherylee Houston (Wheelchair bound Corrie actress) suffers from EDS3. See: http://tinyurl.com/32dvnjd. I don't watch Corrie, so I don't know if she is still in it.
Ehlers Danlos comes in various types. I have type 3, the most common. Ehlers Danlos sufferers are often referred to as 'Medical Zebras', 'Zebras' or 'Genetic Mutants'. No 2 Zebra's have exactly the same stripes, every EDS sufferer presents with different aches/pains/dislocations/sores etc.
We ARE literally falling apart due to EDS. It's an awful lot of 'Chronic Pain & Fatigue' etc.... 24/7. The pain is IMENSE, never ending. I may walk un-aided/with a walking stick/with crutches/use a wheelchair etc. It all depends on the type of day I'm having. I currently rely on a single crutch when out & about. I need it, as my hips, knees & ankles are a MAJOR problem. I can no longer do a 'normal trip' down town & back without extreme difficulty. I don't yet have a wheelchair. I get MULTIPLE sores, septic sores/scratches etc.... daily. Most (99% cause scars).
GP's/Physio quite often don't know much about EDS. It can be VERY hard to find a Proffessional that actually knows of the condition. My Physio 'trigged' to my extended range of motion in the arms etc... She started my whole diagnosis.
It results in multiple scars, skin tears, sores, strecthy skin, bruises, poor wound healing (widened wounds), vision problems etc..... The list of what EDS can affect is literally endless. 80% of the eye can, is affected. As 80% of the eye is collagen based (whites of the eyes/shape of the eyes aka Astigmatism). Most sufferers will have major eye/vision problems. Surgery/having stitches/recovery time etc will also be much more of a problem.
The ONLY good thing about suffering from EDS is that you do tend to look young for your age. Though that can sometimes be a little annoying. I still occasionally get asked to prove I'm over 18, I'm in my 30's :/
ABOUT EDS:
Ehlers Danlos is a genetic condition that your born with. It is sometimes just sooooooo hard to hold down any job, you get used to hiding it to a certain extent, to work through the pain. With previous jobs I always had a DEA (Disability Employment Advisor etc, though I wasn't diagnosed with EDS at that point), this did help a great deal when it came to job interviews etc.
EDS is caused by a faulty Gene, the one to do with collagen formation. Collagen is the glue that keeps joints/muscles/tendons/arteries etc together. Collagen makes up about 80% of the human body and 80% of the eyes. That Gene in sufferers doesn't form collagen properly, or at all. This results in MANY problems, as it affects joints, muscles, tendons, eyes, arteries & ligaments etc.
--
I struggle to even lift/cuddle my Brother's (Dave) Miniture Schnauzer, Jazz. For me she IS a 'Mini Tank'. That is my own nickname for Jazz. After just a short period of playing with Jazz I get TOTALLY worn out. I'm in 'MAJOR BAD' pain.
Source: Through being a member of www.ednf.org
"There are numerous dental problems that may occur; cross-bite, narrow palate, cysts, peg, discolored teeth, jaw pain and clicking, periodontal, and many need braces (i.e orthodontics)".
(I had fixed braces for 2 years, 2 months + to fix a 7mm overbite, I've now had retainers for some time. I'm now just using retainers, mostly on lowers (due to permanent retainer on uppers) at night (July 2011)).
"Hypermobility of the joints of the bones in the middle ear creates problems with effective sound conduction across the middle ear. This loss of energy in route to the inner ear leads to a mild to moderate conductive hearing loss. Because the inner ear is also responsible for balance, improper function leaves some affected with bouts of dizziness. Problems with speech can occur; articulation, swallowing, hoarseness/weak voice, fluency".
"All patients should see a geneticist to determine the specific type of EDS that they have, but patients considering pregnancy must receive genetic counseling so that they can make informed decisions. In addition to concern about passing EDS on to a child, a woman with EDS has an increased risk of miscarriage, premature rupture of membranes, premature births, cervical incompetence, and pre-mature labor".
"Sleep complaints are frequently reported by patients with Marfan and Ehlers Danlos syndrome (EDS)".
"Fragile soft velvet-like skin, some may have stretchy skin (hyperextensibility), or very doughy skin, and/or some have thin skin which shows the underlying blood vessels. Fragile skin that tears and easy bruising can be mild to severe, some individuals have the characteristic "cigarette paper" scars, slow healing can be a problem, severe scarring; slow and poor wound healing; development of molluscoid pseudotumors (fleshy lesions associated with scars over pressure areas)".
"Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); shoulders, spine, elbows, wrists, knees, ankles, and laxity in the hands and fingers. and early onset of osteoarthritis".
Etc...........
--
Ehlers Danlos Syndrome is an invisible illness, which means that the patient looks healthy even when symptoms are at their worst.
Diagnosis tends to happen in your 20's to 30's. I was diagnosed 11th December 2009, at 31 years old. While getting it finally diagnosed is great, it's also real depressing as you know things will only get worse. There is currently no cure for EDS. Type 4 EDS is the Vascular type and can/does prove to be be fatal.
I suffer from (See my EDS Blogs on Others page for further details):
I had multiple hospital/clinic appointments growing up (upto the age of 16 yrs old) for:
Bone Age (3 years behind)/Being Annorexic/Meningitis/Height/Weight/Dental//Knee Problems/Autism Tests/Regular Eye Tests etc (some which can be put down 2 EDS).
Daily, chronic pain & fatigue
Brain Fog
Risk of my shoulders easily dislocating, as they have previously
Trouble sleeping
Moveable kneecaps (I went to multiple hospital/clinic appointments for this while growing up)
Poor/Slow wound healing
Restless legs
Bladder/Bowel problems
Crippling muscle spasms
Weak muscles
Droopy eyelids (especially my left eye)
Excessive winkle formation (around the eyes)
Poor vision (Without glasses: I've only been able to see REAL close up, distance is totally blurry (i.e. Myopia)
Etc..........
I wouldn't ever wish EDS on anybody, it REALLY sucks. Pain killers are of little/no help. I currently rely on a crutch when out and about. My left shoulder has dislocated a couple of times. My right shoulder is the real problem. It's dropped out over 15 times in the last 10 years or so. That started as a result of a school work experience placement at another school. I was there only 3 days, my shoulder had dropped out twice (at nightime).
Phsyio sessions for various problems are common with EDS.
I currently take Creatine/Creatine Ethyl Ester/Protein Bombs/Protein Bars etc & use my dumbells to build up muscle mass. Purely to keep my joints more in place, and speed recovery in general.
The 1-10 pain scale (10 being worst pain ever) is useless with me & Mum (who also has EDS 3). On a bad day we normally would put it at more of a 15-16 (TOTAL agony). On a good day we are usually at about 8-9. Some days are really bad, often don't really want to get out of bed in the mornings.
You may also get regular 'Brain Fog'. Brain Fog is common in EDS sufferers etc.... I often forget PC type stuff now, luckily not when I've had a client over. You may have problems doing the simplest of things, like making a cup of coffee. You may forget the mug.
Brain fog may be described as feelings of mental confusion or lack of mental clarity. It is called brain fog because it can feel like a cloud that reduces your ability to think clearly. It can cause a person to become forgetful, detached and often discouraged and depressed.
Symptoms of Brain Fog:
1. Poor short term memory
2. Difficulty learning new things
3. Poor mental stamina & concentration - there may be difficulty reading a book or following a film story etc...
4. Difficulty finding the right word
5. Thinking one word, but saying another
Day to day you DON'T know how you will be, pain/fatigue/discomfort wise etc.
October 12th is World Arthritis Day - Also for those that suffer from EDS (wear your stripes on October 12th).
--
If you are diagnosed with Ehlers Danlos there are a few things to think about. You may need/want to buy (some are very expensive):
Strong Painkillers
Regular eye tests - As EDS can/does affect your eyesight
Books about Ehlers Danlos - There are some really good ones out there
Incontenance Products (due to bladder/bowel problems)
Adjustable Bed with built in massage (for constant aches/pains/sleeping problems etc...)
Medical ID Bracelet
Medical Wristbands
Crutches
Walking Sticks
Wheelchair
Scooter
Slings
Finger Splints
Etc....
Ehlers Danlos comes in various types. I have type 3, the most common. Ehlers Danlos sufferers are often referred to as 'Medical Zebras', 'Zebras' or 'Genetic Mutants'. No 2 Zebra's have exactly the same stripes, every EDS sufferer presents with different aches/pains/dislocations/sores etc.
We ARE literally falling apart due to EDS. It's an awful lot of 'Chronic Pain & Fatigue' etc.... 24/7. The pain is IMENSE, never ending. I may walk un-aided/with a walking stick/with crutches/use a wheelchair etc. It all depends on the type of day I'm having. I currently rely on a single crutch when out & about. I need it, as my hips, knees & ankles are a MAJOR problem. I can no longer do a 'normal trip' down town & back without extreme difficulty. I don't yet have a wheelchair. I get MULTIPLE sores, septic sores/scratches etc.... daily. Most (99% cause scars).
GP's/Physio quite often don't know much about EDS. It can be VERY hard to find a Proffessional that actually knows of the condition. My Physio 'trigged' to my extended range of motion in the arms etc... She started my whole diagnosis.
It results in multiple scars, skin tears, sores, strecthy skin, bruises, poor wound healing (widened wounds), vision problems etc..... The list of what EDS can affect is literally endless. 80% of the eye can, is affected. As 80% of the eye is collagen based (whites of the eyes/shape of the eyes aka Astigmatism). Most sufferers will have major eye/vision problems. Surgery/having stitches/recovery time etc will also be much more of a problem.
The ONLY good thing about suffering from EDS is that you do tend to look young for your age. Though that can sometimes be a little annoying. I still occasionally get asked to prove I'm over 18, I'm in my 30's :/
ABOUT EDS:
Ehlers Danlos is a genetic condition that your born with. It is sometimes just sooooooo hard to hold down any job, you get used to hiding it to a certain extent, to work through the pain. With previous jobs I always had a DEA (Disability Employment Advisor etc, though I wasn't diagnosed with EDS at that point), this did help a great deal when it came to job interviews etc.
EDS is caused by a faulty Gene, the one to do with collagen formation. Collagen is the glue that keeps joints/muscles/tendons/arteries etc together. Collagen makes up about 80% of the human body and 80% of the eyes. That Gene in sufferers doesn't form collagen properly, or at all. This results in MANY problems, as it affects joints, muscles, tendons, eyes, arteries & ligaments etc.
--
I struggle to even lift/cuddle my Brother's (Dave) Miniture Schnauzer, Jazz. For me she IS a 'Mini Tank'. That is my own nickname for Jazz. After just a short period of playing with Jazz I get TOTALLY worn out. I'm in 'MAJOR BAD' pain.
Source: Through being a member of www.ednf.org
"There are numerous dental problems that may occur; cross-bite, narrow palate, cysts, peg, discolored teeth, jaw pain and clicking, periodontal, and many need braces (i.e orthodontics)".
(I had fixed braces for 2 years, 2 months + to fix a 7mm overbite, I've now had retainers for some time. I'm now just using retainers, mostly on lowers (due to permanent retainer on uppers) at night (July 2011)).
"Hypermobility of the joints of the bones in the middle ear creates problems with effective sound conduction across the middle ear. This loss of energy in route to the inner ear leads to a mild to moderate conductive hearing loss. Because the inner ear is also responsible for balance, improper function leaves some affected with bouts of dizziness. Problems with speech can occur; articulation, swallowing, hoarseness/weak voice, fluency".
"All patients should see a geneticist to determine the specific type of EDS that they have, but patients considering pregnancy must receive genetic counseling so that they can make informed decisions. In addition to concern about passing EDS on to a child, a woman with EDS has an increased risk of miscarriage, premature rupture of membranes, premature births, cervical incompetence, and pre-mature labor".
"Sleep complaints are frequently reported by patients with Marfan and Ehlers Danlos syndrome (EDS)".
"Fragile soft velvet-like skin, some may have stretchy skin (hyperextensibility), or very doughy skin, and/or some have thin skin which shows the underlying blood vessels. Fragile skin that tears and easy bruising can be mild to severe, some individuals have the characteristic "cigarette paper" scars, slow healing can be a problem, severe scarring; slow and poor wound healing; development of molluscoid pseudotumors (fleshy lesions associated with scars over pressure areas)".
"Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); shoulders, spine, elbows, wrists, knees, ankles, and laxity in the hands and fingers. and early onset of osteoarthritis".
Etc...........
--
Ehlers Danlos Syndrome is an invisible illness, which means that the patient looks healthy even when symptoms are at their worst.
Diagnosis tends to happen in your 20's to 30's. I was diagnosed 11th December 2009, at 31 years old. While getting it finally diagnosed is great, it's also real depressing as you know things will only get worse. There is currently no cure for EDS. Type 4 EDS is the Vascular type and can/does prove to be be fatal.
I suffer from (See my EDS Blogs on Others page for further details):
I had multiple hospital/clinic appointments growing up (upto the age of 16 yrs old) for:
Bone Age (3 years behind)/Being Annorexic/Meningitis/Height/Weight/Dental//Knee Problems/Autism Tests/Regular Eye Tests etc (some which can be put down 2 EDS).
Daily, chronic pain & fatigue
Brain Fog
Risk of my shoulders easily dislocating, as they have previously
Trouble sleeping
Moveable kneecaps (I went to multiple hospital/clinic appointments for this while growing up)
Poor/Slow wound healing
Restless legs
Bladder/Bowel problems
Crippling muscle spasms
Weak muscles
Droopy eyelids (especially my left eye)
Excessive winkle formation (around the eyes)
Poor vision (Without glasses: I've only been able to see REAL close up, distance is totally blurry (i.e. Myopia)
Etc..........
I wouldn't ever wish EDS on anybody, it REALLY sucks. Pain killers are of little/no help. I currently rely on a crutch when out and about. My left shoulder has dislocated a couple of times. My right shoulder is the real problem. It's dropped out over 15 times in the last 10 years or so. That started as a result of a school work experience placement at another school. I was there only 3 days, my shoulder had dropped out twice (at nightime).
Phsyio sessions for various problems are common with EDS.
I currently take Creatine/Creatine Ethyl Ester/Protein Bombs/Protein Bars etc & use my dumbells to build up muscle mass. Purely to keep my joints more in place, and speed recovery in general.
The 1-10 pain scale (10 being worst pain ever) is useless with me & Mum (who also has EDS 3). On a bad day we normally would put it at more of a 15-16 (TOTAL agony). On a good day we are usually at about 8-9. Some days are really bad, often don't really want to get out of bed in the mornings.
You may also get regular 'Brain Fog'. Brain Fog is common in EDS sufferers etc.... I often forget PC type stuff now, luckily not when I've had a client over. You may have problems doing the simplest of things, like making a cup of coffee. You may forget the mug.
Brain fog may be described as feelings of mental confusion or lack of mental clarity. It is called brain fog because it can feel like a cloud that reduces your ability to think clearly. It can cause a person to become forgetful, detached and often discouraged and depressed.
Symptoms of Brain Fog:
1. Poor short term memory
2. Difficulty learning new things
3. Poor mental stamina & concentration - there may be difficulty reading a book or following a film story etc...
4. Difficulty finding the right word
5. Thinking one word, but saying another
Day to day you DON'T know how you will be, pain/fatigue/discomfort wise etc.
October 12th is World Arthritis Day - Also for those that suffer from EDS (wear your stripes on October 12th).
--
If you are diagnosed with Ehlers Danlos there are a few things to think about. You may need/want to buy (some are very expensive):
Strong Painkillers
Regular eye tests - As EDS can/does affect your eyesight
Books about Ehlers Danlos - There are some really good ones out there
Incontenance Products (due to bladder/bowel problems)
Adjustable Bed with built in massage (for constant aches/pains/sleeping problems etc...)
Medical ID Bracelet
Medical Wristbands
Crutches
Walking Sticks
Wheelchair
Scooter
Slings
Finger Splints
Etc....
The following PDF file is an 'Open Letter' which can be found online. I didn't write it, but it can be shared & put 'out there' etc..... It REALLY does cover what it's like to live with EDS.
| eds_letter_2_loved_ones.pdf |
EDS Pocket Book:
Pics of me & Mum on October 12th 2010:
 |  |
Some pics of my sores/scars (I do have many more scars) & dodgy knees etc:
My camera's a bit useless, so some pics may not be too great. These DO ALL (except Scars) result in a great deal of pain 24/7.
A close-up of my right cheek:
 My right knee (slightly different angle):
 Old scar, just above my right knee:
 Old scar - one of many:
 How the Septic Sore (right) is now + small sore:
 My left wrist - It's gone weird, red & sore from watch strap (now with a sore cat scratch - as of 14th/15th Jan. 2011):
 | My left arm - freckle & a 'Septic Skin Tear':
 My right knee (from directly above):
 Just one of MANY (7+) 'Septic Skin Tears' that I currently have (Upper right arm):
 Septic sore:
 Close up of above Septic Sore - As it is now:
 |
27th July 2011. A scratch (1 ¼ inch long) on the left side of my waist: (Next pic is a close-up)
 |  |
To try and deal with the daily pain of EDS etc, you could use products such as:
Scalar Energy Pendants - These have proved to be helpful to me recentley. Do a search on i.e. Ebay etc. AVOID: Power Bands - These have been proven to maybe, been a bit iffy. Go with a Tourmaline based wristbands etc.
Silicone Minus Ion Jelly Sport Wrist Bracelet Watch - Go for the ones that include Tourmaline. Tourmaline attracts negative ions (good guys).
Positive Ions = Bad (Cause stress, chronic illness etc)
Negative Ions = Good (Certain wristands etc balance out the negative & positive ions).
Do you feel fatigued using the PC?
Are you in daily pain?
Do mobile phones give you a headache?
Are you constantly stressed?
Do you get migraine type headaches?
Are you chronically ill?
Do you get headaches, in general?
If so, you are being bombarded with positive ions (bad guys).
I, have so far got a Scalar Pendant and a Minus Ion Watch. In the last few days of wearing these, I have had less pain and I have slept better than I have in a while. I normally slept between 4:30am-10am at the latest. I now sleep most nights between 12:30-9am. There is positive and negative feedback regarding these items. Some say they don't work, other sites say they do. All I know is: I am in less pain. My swollen knees have been less of a problem. I have been able to raise my legs higher than ever before (an old exercise I was given while growing up), (all since getting pendant and watch). I have felt less tired working on my PC throughout the day. I have been more mobile during the day.
Silicone Minus Ion Jelly Sport Wrist Bracelet Watch - Go for the ones that include Tourmaline. Tourmaline attracts negative ions (good guys).
Positive Ions = Bad (Cause stress, chronic illness etc)
Negative Ions = Good (Certain wristands etc balance out the negative & positive ions).
Do you feel fatigued using the PC?
Are you in daily pain?
Do mobile phones give you a headache?
Are you constantly stressed?
Do you get migraine type headaches?
Are you chronically ill?
Do you get headaches, in general?
If so, you are being bombarded with positive ions (bad guys).
I, have so far got a Scalar Pendant and a Minus Ion Watch. In the last few days of wearing these, I have had less pain and I have slept better than I have in a while. I normally slept between 4:30am-10am at the latest. I now sleep most nights between 12:30-9am. There is positive and negative feedback regarding these items. Some say they don't work, other sites say they do. All I know is: I am in less pain. My swollen knees have been less of a problem. I have been able to raise my legs higher than ever before (an old exercise I was given while growing up), (all since getting pendant and watch). I have felt less tired working on my PC throughout the day. I have been more mobile during the day.
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| Ehlers Danlos Syndrome Support |
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