I Have Ehlers-danlos Syndrome Type 3

A Ehlers-Danlos Syndrome Type 3 anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Ehlers-Danlos Syndrome Type 3. You're not alone. 225 People

    I Have Ehlers Danlos Syndrome

    I was born with a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS). I was clinically diagnosed with Type 3 and tested positive for Type 1 via blood work. Before being diagnosed with EDS, I was diagnosed with what seems like everything under the sun...Growing...
    EDSersUnited EDSersUnited
    22-25
    Mar 22, 2012

    I Have Type 3 Too!

    I have EDS type 3 and haven't been able to find any solution to manage the pain short of sitting next to a friend that's smoking a certain plant he shouldn't be... Trouble is i'm rather stubborn and although I know it will stop my pain for a good few d i'm too scared to start...
    ellsstuff ellsstuff
    16-17
    1 Response May 13, 2012

    Son And I Have Eds 3...

    My son was dx with EDS 3 about 7 years ago. He is 13 now. He has pain in his legs, back, and feet at the moment. They just fitted him with semi rigid orthotics due to constantly spraining his ankle. We are hoping it helps a bit with his pain. When he was 10 he mildly subluxed his...
    Lilmel312003 Lilmel312003
    36-40
    2 Responses Feb 25, 2011

    Eds Type 3 Here

    To all other patients, somedays this is hard, somedays it is funny. Keep going on, this is not the end. I do have days when I can't just stay on my own feet since both knees and hip go off. But I stand up and walk or drag my self to where I want to go. My best wishes to you and...
    jmoreno jmoreno
    26-30
    Feb 6, 2011

    I am 30, I have had multiple dislocations in my

    shoulders and hips and surgery in both shoulders. After years of trying to figure out what is wrong with me I finally got the answer. 3 years ago I ask my doctor if it could be EDS and she said that it was not possible. So I went looking for more and more things, every time I...
    harve1138 harve1138
    31-35, M
    1 Response Apr 26, 2014

    Web MD has an app called pain coach,

    it's a great way to keep track of day to day pain, what triggers it, and what helps. It also has goal that give new ideas to deal with the pain. This app really helps me keep track of everything and thought I'd pass it on.
    deleted deleted
    26-30
    Dec 22, 2013

    My Diagnosis Story

    I was born with both of my hips fully dislocated. The doctors were able to get my right one back in, but I had to have surgeries on my left, and was in a spica cast until I was almost 3. Even after that my hips still popped out, but I just thought it was something I would have to...
    shannonj35 shannonj35
    18-21, F
    Oct 20, 2013

    My Story And Now My Daughter's

    Finding out what is wrong with me has been a long trip. I remember having severe leg/muscle pains as a child. My grandmother would massage my legs while we were under an electric blanket. Pain has been a constant in my life, and just gets worse as time goes on. My joints have...
    nbookmba nbookmba
    26-30
    2 Responses Dec 27, 2011

    Too Young To Give Up Now

    I am 21 yars old and a mother of three beautiful boys. I have a wonderful fiance and used to run my own home based daycare. I have Ehlers-Danlos Syndrome type 3.  I have always been clumsy since i was very small wich led to a lot of dislocated joints. Thought it was very...
    narmenta510 narmenta510
    18-21, F
    2 Responses Apr 14, 2010

    Finally I Feel Like Everything Makes Sense...

    I have always been flexible. We always called it 'double jointed' in the playground, and I would always scare my friends by touching my thumb to my forearm, or putting my arm over my shoulder and touching my back. I never really thought anything of it. Maybe it was because I...
    MissSage MissSage
    22-25
    Jun 15, 2012

    I'm Cripple, Not Weak.

    I have suffered with EDS my whole life with many injuries and chronic pain. I tell the curious, "Just think of me like Gumby on a hot day." I wear braces on my knees and have custom braces for my akles and feet. I have a 20% rotation in my pelvis which has partially dislocated my...
    Boots1888 Boots1888
    26-30
    Jul 23, 2013

    Ehlers Danlose Syndrome & Epilepsy

    I am 20 yrs old.  I started experiencing symptoms of a neck problem when i was 14. At 16 i started going to the chiropractor for my joint pain. He took x-rays of my neck and spine and they revield that my neck was completely straight and my back was starting to make an "S...
    confused330 confused330
    18-21, F
    4 Responses Aug 21, 2010

    Looking For Advice

    Hi everybody, I have very recently been diagnosed with EDS type 3.Im 27 years old, and since I can remember, I have suffered with pain, everywhere and anywhere. I have been in and out of consultants offices. GPs, and hospitals. Last year I was diagnosed with Chronic Fibromyalgia...
    Lorripop Lorripop
    26-30, F
    5 Responses Jun 26, 2012

    Recently Diagnosed...

    Hello there, I am a 29 year old female and I was recently diagnosed with EDS Type III/Hypermobility. I was referred to a geneticist after my Rheumatologist suggested I should be tested, as I was having joint pain, subluxations, chronic fatigue, of course, hypermobility. Due to...
    ErinLeeTate ErinLeeTate
    26-30, F
    3 Responses Jul 27, 2012

    Eds And It's Life Altering Effects

    My name is Megan. I am 16 and was diagnosed with HMS (hypermobility syndrome) at the age of 7. Since I was a young girl, I have been involved with every sport at my school. Basketball. Dance. Cheerleading. Softball. Swimming. etc. When I was 7, I was told to lower my physical...
    cedarpointforlife cedarpointforlife
    16-17, F
    1 Response Dec 13, 2010

    I'm Kayla I'm 14 and have Ehlers-danlos

    syndrome type 3. I was diagnosed with this syndrome about a month ago and my life has totally changed. I went from being able to do tons of my favourite things like running to not being able to do them at all. I mean it's great being able to know what's wrong and why I was...
    KaylaMarie9901 KaylaMarie9901
    16-17, F
    1 Response Dec 8, 2013

    Where Do I Go From Here??

    I am 30 years old and am newly diagnosed with EDS type 3 , i was prone to injuries as a child including broken bones as a baby, i had the typical 'growing pains' an was palmed off as a 'moany' child, my hips dislocated on various occasions throughout my child hood to the point i...
    shortstuff30 shortstuff30
    26-30, F
    2 Responses Oct 17, 2012

    My Life

    The experience that has most greatly affected my life has been living with Ehlers Danlos Syndrome.From the time I could walk, my mom knew that there was something wrong with my ankles and knees. I fell down a lot, and got injured doing simple things like walking and bending over...
    NicoleLynne NicoleLynne
    18-21, F
    3 Responses Mar 18, 2012

    I had my diagnosis at 19,

    I have several other medical problems which have resulted in very limited mobility. I have good bouts where I can move much more easily but I have 'flare ups'. I'm having a really bad one atm. I'm thinking of getting an assistance dog (via Canine Partners). I have to use...
    noonespecial44 noonespecial44
    26-30, F
    Jan 19, 2015

    35 Years Old But Feel Like I Am 65

    Well I will start off by saying I was diagnosed with Ehlers-danlos type 3 about 6 years ago. The reason I went to the doctor in the first place was because I had went to a chiropractor and she refused to treat me because she stated that my bones looked to thin in the x-rays. Well...
    Journeyman106 Journeyman106
    31-35, M
    1 Response May 4, 2012

    Jaw Pain And Dislocation While Eating!

    Does anybody have any practical solutions to stopping jaw dislocation and discomfort while eating "regular" foods. I don't think I can live off mush and soup forever.
    Vivagalore Vivagalore
    31-35, F
    4 Responses Apr 1, 2012

    I was diagnosed years ago

    but don't know what to do or how to help I am so scared.
    JennaHurts JennaHurts
    22-25, F
    3 Responses Mar 8, 2014

    Hello!

    I am 18 andI just got diagnosed with ehlers-danlos syndrome type 3 hypermobility 3 days ago. I had chest pains and joint pains for about 7 years but never got told anything. I always thought I had lupus because I also get rashes so I was always looking for ways to get diagnosed...
    LaurenRobertson8 LaurenRobertson8
    18-21
    1 Response May 28, 2012

    I Have Eds And Am Very Depressed.

    Hey everyone my name is Chris. I'm 18 and have severe EDS. I was born with a brain tumor that left me with severe weakness and partial paralysis on my left side. I am also double jointed. As I got older I learned to cope with this and graduated high school with honors. I than...
    Deloexan Deloexan
    18-21, M
    5 Responses Jan 20, 2012

    Hello! I have a question

    and would be grateful for your input. My boyfriend is a 27 yo with hyper-elastic skin, chronic/debilitating back pain, and chronic constipation, but no hyper-mobility in his appendages. He is actually extremely inflexible. Has anyone's experience seemed similar? I suspect he may...
    girlingreen girlingreen
    31-35, F
    Aug 8, 2015

    Hanging In There

    I'm 16 and was diagnosed when i was around 4 since then i have had chronic pain all over light yoga helps some vitamin C helps to up to 10,000 mg is what i used to take but it made me really sick so i quit. on bad day i take a muscle relaxer and a Vicodin. When i got braces on...
    alaina97 alaina97
    18-21
    1 Response Jun 14, 2013

    21 Male With EDS Type 3 Just Looking For Advice

    ( please excuse any grammar and spelling mistakes the pain has kept me up for 32 hours now even with my meds and i just need a form of talking to someone about this that might understand) I have been told that i was "hyper-mobile and loose jointed" since was ten and for most part...
    AyatoXephon AyatoXephon
    22-25
    2 Responses Jun 5, 2013

    I Have Ehlors Danlos Syndrome

    I have Ehlors Danlos Syndrome I am 26yrs old and in so much pain I find myself crying more than not. It gets severe in the winter months but its starting to hurt now. I cannot get my doc or any doc I have been to in the past 5yrs to believe me when I say im in pain. I am at my...
    autylynn284 autylynn284
    26-30
    4 Responses Aug 23, 2011

    I Finally Understand

    Growing up, I was always called 'double jointed'. I would Always scar my parents and friends when I bent my thumb to My forearm or when I would put my arm over my shoulder and touch my back or when i would cross all my fingers together. Back in oct. 2010, I started to relize that...
    MissSeals MissSeals
    16-17, F
    Jul 1, 2012

    Ehlers Danlos Suffer

    I am 28 years old and I was diagnosed with Ehlers Danlos Type III about 3 years ago.  I had been told all my life I was "hyper-mobile" or "double jointed" by doctors, but it was never seen as a bad thing, even when it caused injury.  They always said it was better than tearing...
    CHigh2001 CHigh2001
    26-30
    9 Responses Mar 15, 2011

    16 EDS, Being Judged

    So my whole life I grew up with some joint pain, everyone always telling me I was making it up and just to suck it up. As a competitive swimmer, I had to go through some pretty tough 3 hour practices. There were so many practices, where I just "sucked it up" and swam through it...
    pookey1996 pookey1996
    16-17
    1 Response May 12, 2013

    I am 32 years old, diagnosed three years ago.

    I have had 5 surgeries on my leg and 3 on my shoulder. I am on anti-depressants, nerve painkillers, anti-inflammatories and painkillers. Some days are better than others but lately they have mostly been bad. I have one working leg and one working arm. I use crutches and a...
    gimpy55 gimpy55
    31-35, F
    Mar 26, 2014

    I'M 17 And Living With EDS

    Thanks for all of your stories, they helped me to realise that there are some people out there that do understand. Some of my earliest memories include seeing my dad in a great deal of pain and sometimes unable to walk. I remember my mum explaining that "daddy can't walk well...
    Beccatb Beccatb
    18-21, F
    2 Responses May 22, 2013

    I've Got The Rest Of My Life To Live With Ehlers-danlos Syndrome Type 3

    I was diagnosed with EDS type 3 just this past year after a skating accident at my friends house. Her dad had built an ice-skating rink in her backyard and we were playing hockey with the boys when I tripped on the ice or someones skate and fell on my knee knocking it out of...
    chic1995 chic1995
    13-15
    Feb 13, 2011

    Hypermobility Really Rocks My World!

    My name is Susan and I would really like to meet someone with the problems I have to learn how they cope, what treatments work and if their Dr. really understands hypermobility.  I am 52 years old and diagnosed with Hypermobile Joint Syndrome, Fibromyalgia and...
    SusanRae SusanRae
    51-55, F
    1 Response Mar 2, 2010

    My Name Is Taylor...

    I'm 13 years old.When I was 2 years old, I used to experience pain, and friends and family members noticed I couldn't walk like most babies. So the doctors, after many tests, diagnosed me with... Ehlers-danlos Syndrome.So basically, I can't run as fast as many of my friends, I...
    tay963 tay963
    13-15
    2 Responses Jun 1, 2011

    27, And Hoping For Answers

    Hi, I have just been diagnosed with EDS type III. I have finally found doctors to believe my pain but still have yet to be genetically tested (appt set for end of June) I was told at 16 years old my pain in my left knee my due to loose ligaments and still wonder why it was left...
    SuzeBee SuzeBee
    26-30
    5 Responses May 19, 2012

    Thanks

    Just wanted to thank everyone on here. Wither you've ever posted or just joined to say you have it. Having this page to come to helps me a lot. It's nice to know I'm not alone and people are on this journey with me. People who get it when you say you're used to being in pain or...
    deleted deleted
    26-30
    Nov 21, 2013

    My Story.

    Hi all. I am a 14 (almost 15) year old girl.  As a child I was always dancing, ballet, tap, jazz, hip hop-- all of it.  I never really had noticed anything wrong with me.  I was always very tall and quite skinny, but still healthy looking.  I also enjoyed...
    Ajayjay Ajayjay
    13-15, F
    3 Responses Oct 17, 2009

    My 3 Children Have Been Diagnosed With Ehlers Danlos Syndrome Type 3

    Hello my name is Karen i have 3 beautiful children. Jaykeb 9 years, Benjamin 2 Years and Melissa 11 months, Jaykeb was diagnosed with Ehlers danlos syndrome type 3 a year ago and the other two children were diagnosed a week ago. Jaykeb has had multiple fractures and...
    karenjf karenjf
    26-30, F
    6 Responses Feb 18, 2010

    Becoming A Zebra

    I always prided myself on being unique. I never wanted to be just like everyone else. Little did I know just how different I really was. The irony is that when I was a child I wanted to be a geneticist when I grew up. I later revised that life goal when I realized it would...
    PalominoMorgan PalominoMorgan
    31-35
    1 Response Sep 18, 2011

    16 With EDS

    I am 16 a recently got diagnosed with Type 3 of EDS. I have been going to different types of doctors since I was about 11 with them just saying stuff like “Oh you are double jointed”. So that led to years of annoying physical therapy. Being a competitive swimmer it started to...
    pookey1996 pookey1996
    16-17
    1 Response Sep 2, 2012

    Ehlers-Danlos Syndrome Type 3/Hypermobility, "baby aneurysms," and ...

    Hello fellow EDSers (aka Zebras). Last year, in 2011, Mayo Clinic finally solved the mystery diagnoses--starting with Ehlers-Danlos Syndrome Type 3/Hypermobility and a dizzying array of related and unrelated conditions. I was back at Mayo for several days this spring and am...
    Ehlerey Ehlerey
    51-55, F
    Jul 30, 2012

    EDS-Hypermobility Type (Formerly Type 3) Story

    My name is David, and Gumbydav on YouTube (http://youtu.be/INmlpQWRXy4). I have Ehlers Danlos Syndrome – Hypermobility Type (formally Type 3). Since I was little, I every single joint in my entire body have Subluxations (Partial/Incomplete Dislocations), so they constantly move...
    EDSHTDavid EDSHTDavid
    26-30
    3 Responses Oct 3, 2012

    29 Year Old Mother Of 2.

    I was diagnosed early at the age of 2. My mother was told I would not make it passed 15, spent most of my childhood living in the hospital, pretty much felt like a guini pig for doctors. Regardless of my disability I tried to live my life as normal as possible, obviously I made...
    Arin2more Arin2more
    26-30, F
    Nov 18, 2012

    Nurses Dont Get Sick!

    As long as I can remember I have been able to do crazy things with my joints. From paying jump with my arms to what my nephew calls dinosaure hands. I honestly never correlated the pain in my joints and muscles to the unique abilities my joints had. My doctors growing up didnt...
    kaw798 kaw798
    26-30
    1 Response Feb 23, 2012

    Just Diagnosed

    Im 20 years old from Australia. I have had 4surgeries on both my shoulders and my doc said I have eds 3. I am now starting to get severe pain and cant do many things. Im depressed because I used to play alot of sport and now I can't even throw a tennisbball :(
    kacey44 kacey44
    22-25, F
    4 Responses May 11, 2013

    I'm 54 And Still Here....

    I have not had a diagnosis until a few days ago. My life has been a health nightmare since birth. Straight into an incubator. I have had MANY surgeries, the left lobe of my liver removed, 3 surgeries on an ear that still does not have an eardrum, a tube and ovary and bowel...
    BendyBolt BendyBolt
    51-55, F
    2 Responses Aug 23, 2010

    Diagnosed At Last Only Took 24 Years.

    I'm in pain every day prob like most of you it started when i was 10/11 yrs old now am close to 36. My diagnosis was only discovered by pure luck by my health visitor who's daughters both suffer from eds. I was fine up until 4 years ago the odd day of pain in my lower back but...
    sad1819 sad1819
    31-35
    1 Response Sep 2, 2012

    My Angel

    I am an mother of four children.  My second child a girl named Angel.  She is 10 years old and has been diagnosed with EDS.  It was very apparent at birth that there was something different about her.  The doctors finally said 5 years ago that she had EDS...
    momofangel momofangel
    31-35
    11 Responses Mar 18, 2009

    32 And Just Diagnosed

    Hi. Well my journey has been a long and treacherous but I'm finally here and getting on with my life. From birth I had health issues, all through childhood I got sick all the time, I broke bones and sprained just about every joint in my body. I was a really active kid, danced...
    paggoddess paggoddess
    31-35, F
    1 Response Mar 15, 2013

    I Have Ehlers Danlos Hypermobility Type 3 But I Don't Look Sick,Just Really Tired.

    I have been in pain on one level or another since 4 years of age, when i suffered a random dislocation of both knee caps while walking down the street beside my mother and with that my fear of hospitals began. Most of my childhood consisted of trips to one specialist or another...
    tarlegs tarlegs
    46-50, F
    Nov 6, 2013
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