storiesfromazebra - Tumblr blog

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had this put on this morning because I have been noticing some weird things happening to my heart but I am already look forward to getting it taken off... it is so fucking uncomfortable. I have no idea how I'm going to be able to sleep comfortably tonight... maybe i'll just do an all nighter

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EDS Fact #4

Because of how widespread our symptoms are we can go undiagnosed for a long time (or people think we are crazy)

It’s hard to connect things like velvet-soft skin, constant nausea and random dislocations...                        

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EDS Fact #3

Like our other joints, the joints in our fingers offer no resistance to pressure. This makes a challenge out of holding a pen or cutlery “correctly”, opening a can or sharpening a pencil. BUT we can easily... scratch our own backs

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EDS Fact #2

Due To adrenaline issues, falling asleep can be really hard for us. When we do fall asleep, the adrenaline results in shallow, vivid-dream-filled sleep. So we are unrested not lazy

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EDS Fact #1

EDS is linked to Chiari Malformations. Put simply, our brains may have a unique shape that creates pressure at the base of our skulls. Symptoms range from über uncomfortable to disabling.

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Dear healthy people: if I get told "no pain, no gain" one more time, I am going to throw something at the perpetrator.

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Applying for Disability Benefits

a couple of days after getting diagnosed with EDS I decided to put in a claim for PIP (Personal Independence Payment) which had recently taken over the old DLA (Disability Living Allowance) system. I was told it could take a while to get an appointment for an assessment because of a long waiting list caused by the system changing which I was ok with at the time. I eventually got an appointment to be assessed by ATOS in April 2014 and that's where things started getting ridiculous. in the few days leading up to my assessment I had been having some extremely bad pains in my knees and I was using crutches just to be able to support myself, the assessor tested my grip and said that my grip was very weak, especially in my right hand, she got me to try doing some basic knee exercises but gave up quickly when she saw how much pain it was causing me. on my way out I was told that I should get the results within 6 weeks, but I didn't receive an answer about my claim until 16 weeks later. I was told I had been un-successful in my claim and although they recognized that I had  disability, my disability wasn't serious enough to warrant PIP. I then went on to read through the copy of the report from my assessment and i was shocked and angry, the had re-written almost everything i had originally said during my assessment. I immediately made the decision to have the answer reviewed which a couple months later came back as another rejection, largely due to the fact they were using the report that had been re-written. I was now left with no other choice but to appeal the decision, which luckily is being looked at by an independent panel. as of the day I write this, 16th December 2014, I am still waiting to see if the original decision will be overturned. 

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Random Myth/Fact about EDS #9

Myth: "That's just the way you are." or "That's just the way you were born." or "I don't know why that happened." or "I never saw that before."

Fact:: Based on the experience of people with EDS: Not unless there is a blatantly obvious defect or medical problem that jumps out to the physician. Or the blood work/testing comes back positive for a specific medical condition - Most EDSers have heard these words. If symptoms seem out-of-the-norm, unusual, not often seen, or the physician can not explain why, then, they should be investigated further - Especially if that patient is a child, or an adolescent, they should be referred to a Geneticist. Characteristics/symptoms of EDS seen (in children/adolescents/young adult) by physicians (inexperienced in EDS), that were overlooked and not pursued

any further. Thin translucent skin, with veins easily seen (face,chest, abdomen, thigh), fragile skin, easy bruising, abnormal (widened, dystrophic) scar formation, muscle hypotonia, recurring hernias, hypermobility (shoulders, joints, hands), frequent joint (hip) dislocations/subluxation, chronic joint and limb pain, molluscoid pseudotumors, spheroids, tendon rupture, clubfoot, early onset varicose veins, arterial/intestinal/uterine rupture, arteriovenous fistula, pneumothorax/ pneumohemothorax, rectal prolapse, surgery complications (e.g., wound dehiscence, bleeding, recurrent hernias, skin gaping/tearing, poor wound healing).

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Random Myth/Fact about EDS #8

Myth: "Your just clumsy, that's all."

Fact:: Based on the experience of people with EDS: They report that they were clumsy as children and some still are today. They always seem to get hurt very easily. Children with EDS illustrated a higher incidence of foot and ankle problems, due to ligamentous laxity. Some common problems reported due to hypermobility; ankle instability, clubfeet, a flat arch, intoeing and outoeing position. It has been said, "That an EDS child could trip over the patterns in a rug." If you notice that a child seems to get hurt (stitches, sprains, breaks, bruises, wide scars (atrophic papyraceous appearance) gaping wounds) more than other children, they should be evaluated by a Geneticist to see if they might have a connective tissue disorder.

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Random Myth/Fact about EDS #7

Myth: "It's only growing pains."

Fact:: Many folks with EDS have been told that they just had "growing pains", some way into adulthood. And that they would grow out of it. "Growing pains occur in 20% of children aged 2 to 12. Usually, a doctor determines a child has growing pains only by eliminating other conditions." This diagnosis is made after ruling out all organic pathology: inflammatory/noninflammatory, infectious, post-infectious, traumatic, metabolic, tumoral, vascular, hematologic, orthopedic, and benign pathology of children." (Kohmen L, Magotteaux J. "Acute nocturnal and recurrent pain of the limb in Children." Rev Med Liege. 2004; June; 59 (6): 363-6) "Chronic frequently debilitating pain of early onset and diverse distribution is a constant feature in most individuals affected with different types of EDS." "Individuals with EDS experience frequent and severe pain throughout much of their lives. EDS should be considered in the differential diagnosis of chronic musculoskeletal pain." (Sachet.et.al -"Chronic Pain is a Manifestation of the Ehlers-Danlos Syndrome" J Pain/symptoms/ management, 1997; Vol 14, (2), 88-93 see this article in Library section) Those with EDS experience a higher incidence of foot and ankle problems, due to ligamentous laxity. These problems can contribute to degenerative joint disease in the knees and hips. It seems logical that malalignment in the extremities could lead to abnormal forces on the joints and premature degeneration.

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Random Myth/Fact about EDS #6

Myth: "Pain "is not" associated with EDS."

Fact:: Yes, it most definitely is. Pain is a common manifestation of EDS. It can range from mild to severe, and can become chronic. Frequently it is difficult to establish the precise anatomical localization of the pain. Individuals with Ehlers-Danlos Syndrome may experience pain - to greater or lesser degree. Joint pain is most commonly reported in the hypermobility EDS, in the classical EDS and others. As EDS is a disorder resulting from alterations or defects in connective tissue, it is possible that the weakness in connective tissue may cause chronic problems in joints, tendons, ligaments, bones, skin and other tissues that hold the body together, contributing to pain. The degree of pain and the location is not as predictable as one would expect, highlighting the need for an individualized evaluation and treatment for each patient.

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Random Myth/Fact about EDS #5

Myth: "Only certain ethnic groups are predisposed to Ehlers-Danlos Syndrome."

Fact:: There is no known ethnic, racial, geographic or other population divide that appears to predispose to EDS or to different forms of EDS. All are vulnerable to being born with this disorder.

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Why are people with EDS known as Zebras

sourced from http://www.ehlers-danlos.org/about-eds-uk/why-the-zebra

"When you hear the sound of hooves, think horses, not zebras."

This phrase is taught to medical students throughout their training.

In medicine, the term "zebra" is used in reference to a rare disease or condition.  Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses.  Doctors learn to expect common conditions.

But many medical professionals seem to forget that "zebras" DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.  Ehlers-Danlos Syndrome is considered a rare condition and so EDS sufferers are known as medical zebras.  This identity has now been adopted across the world through social media to help bring our community together.

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growing up with a disease i didn’t know i had and then getting diagnosed

as a child I was always extremely flexible, but never thought anything about it as children are naturally flexible anyway. At the age of 7 things started to change though when I began to get agonizing pain in my joints but mostly my knees. I remember so many nights waking up screaming because I was in so much pain so my mum took me to the doctors to find out what was going on, and sure enough the doctor gave us a diagnosis, however it was the wrong diagnosis. he said that the pain was caused by arthritis, a condition that I was showing some similar symptoms of, and that runs in the female side of the family. At the time we had no reason to question this diagnosis because it made some sense, but slowly over the years it got worse and worse. we moved and had to go register with a new doctor so my mum thought it would be a good idea to go see if our new doctor could suggest some ways to maintain the pain because it was getting so bad, but he said it was just growing pains so there wasn’t anything that could be done and that I would grow out of it, yet again another wrong diagnosis. by this point I was getting annoyed by the fact I was always in so much pain and the slightest little thing would make the pain worse. When I started high school at the age of 11 I had already settled my mind on the fact it had to be arthritis because so far it was the only diagnosis that made any sense. I knew it wasn’t growing pains because I have always been quite short and never really grown that much to cause growing pains. my teachers didn’t always believe me when I said I couldn’t do something in P.E because I was in too much pain or I knew the activity would cause more pain and they would force me to do them anyway which has now resulted in some permanent damage to the tendons and ligaments around my knee joints. As the years continued to pass by I got used to always being in some level of pain, whether it was a dull aching pain or agonizing pain that felt as though someone was stabbing me with multiple knives over and over again in my knees. it was only when I had turned 18 that I decided I really had to find out if it really was arthritis or not because my pain was continuously getting worse and yet my sister, who has arthritis, was having none of the issues that I had been dealing with. I told my doctor that I wanted to be tested for arthritis, so he sent me to have a blood test at the hospital. a week later the results came back negative and I was so confused because now I had no idea what was wrong with me and neither did my doctor. he had always thought that it was growing pains, but now I was 18 and therefor wouldn’t be dealing with growing pains because I had finished growing. he referred me to a rheumatologist to see if I could find an answer there. on October 25th 2013 I saw the rheumatologist who looked me up and down with a strange look, as if she had some idea of what was wrong with me already. she got me to go through the beighton score where I scored 6 out of 9 points. after I had done that she sat me down and told me I had joint hypermobility syndrome (which now scientists have determined is the same as Ehlers Danlos Syndrome Type 3) I was so happy, even though I had just been diagnosed with an incurable condition, at last I had an answer. I finally knew what was causing the pain that I had been experiencing for the last 11 years of my life. When friends and family asked what was wrong I could finally give them an answer.