4,971 Posts

graciegallows Day 1: There are 7 types of Ehlers Danlos but each is basically caused by a defect in the way your body produces collagen. Collagen is a protein and protein makes up about 20% of your body. 25-35% of your body's protein is collagen. The word "collagen" is derived from the Greek "kolla," meaning glue. Essentially the "glue" that holds our bodies together is defective.EDS affects our entire bodies.

May is Ehlers-Danlos Syndrome Awareness Month. I'll be sharing facts each day this month to help not only to raise awareness, but also to educate about my disorder. To learn more, check out ednf.org or message me for additional resources.
17min

» LOG IN to write comment.

theedsociety May 1st marks the start of Ehlers-Danlos Syndrome Awareness Month and we need your help. Please like, share and tell us your experiences!

We are striving toward a time when all those with Ehlers-Danlos syndrome (EDS) have their right for an early diagnosis, good management, respect and recognition for their condition, a time when geography does not determine your quality of life and when you tell some one you have Ehlers-Danlos syndrome, they do not ask what that is. It can take years for those with EDS to be diagnosed. iI is often a battle against not being believed and against lack of knowledge in the medical profession.

What is EDS?

Ehlers-Danlos syndromes (EDS) are a collection of heritable connective tissue disorders. Either directly or indirectly, EDS are known or thought to alter the biology of collagen in the body (the most abundant protein), which can lead to multi-systemic symptoms. Each type has certain physical traits and with notable exception to the most common form, the hypermobile type of EDS, most types have a known disease-causing gene.

There are physical characteristics that are common to all types of EDS, including hypermobile joints (joints that move in greater amounts than expected) and skin involvement, such as any of the following: soft, stretchy, saggy, too thin, easy bruising, easy wounding, poor wound healing and/or atrophic scaring.

Each type is a distinct entity and may have very specific and unique features. It is highly improbable to have more than one type of Ehlers-Danlos syndrome, but as they have features and ‘biology’ in common, each type may appear to have variable features of other types.

Visit ehlers-danlos.com to find out more about the signs, symptoms and diagnostic criteria for EDS.
#EhlersDanlosAwareness #ehlersdanlos #ehlersdanlossyndrome #EDS #hypermobile #hypermobility #chronicpain #invisibleillness #ehlersdanlosawareness #EDSawareness #EDSawarenessmonth #ItsOurTime #hypermobile #vascularEDS #vascularehlersdanlos --
3h

» LOG IN to write comment.

theedsociety May marks the start of Ehlers-Danlos Syndrome Awareness Month. We are striving toward a time when all those with Ehlers-Danlos syndrome have their right for an early diagnosis, good management, respect and recognition for their condition. A time when geography does not determine your quality of life and when you tell some one you have Ehlers-Danlos Syndrome, they do not ask what that is.

Join us. ehlers-danlos.com 🌎

#ehlersdanlos #ehlersdanlossyndrome #EDS #hypermobile #hypermobility #chronicpain #invisibleillness #ehlersdanlosawareness #EDSawareness #ehlersdanlosawarenessmonth #edsawarenessmonth #bendy #zebra #chronicpain #invisibleillness #ehlersdanlossociety #HMS #vascularehlersdanlos #veds #vascularEDS #classicalehlersdanlos
4h

» LOG IN to write comment.

ehlersdanlosuk Ehlers-Danlos syndrome (EDS) is a genetic disorder in which the structure of connective tissue is abnormal due to a gene mutation. This results in abnormally fragile and hyper-extensible tissues throughout the body which can lead to a range of multi-systemic symptoms; the effect on the body is widespread and not limited to one body system.

There are different types of the condition and a vast spectrum of symptoms are experienced by our community. Although many lead full and active lives, EDS can lead to physical disability and some rarer types can be life limiting. There is a lack of knowledge about EDS in the medical profession and it is therefore often misdiagnosed or overlooked. Find out what EDS UK does to help here ehlers-danlos.org

#EDS #ehlersdanlos #ehlersdanlosawareness #ehlersdanlosawarenessmonth #hypermobile #hypermobility #EDSawarenessmonth
4h
  •   davison_nat My lil girl suffer, diagnosed late last year and I'm still learning x 4h
  •   shelbyhutson15 hypermobility type right here🏼 3h

» LOG IN to write comment.

  •   twin.mama.mo 1d
  •   hannah_and_austin @vanderberry @twin.mama.mo he's so unstable outside because it's not flat, but he managed a few steps quite well today 1d
  •   vanderberry Ahh bless him, but its just practice that he needs & theres nothing more motivating for him than getting to explore nature if he keeps moving and trying! Its lovely to see him doing so well xx 1d
  •   hannah_and_austin @vanderberry thank you :) yeah he's trying lots and improving so quick! xx 1d

» LOG IN to write comment.

hannah_and_austin I still can't get over how well Austin is doing with walking now In this photo he had walked past me, then carried on all the way to where you see him in this picture. 🏼 He barely crawls anywhere indoors now and is walking round the house like he owns the place! Some days I swear he's starting to run!! #hypermobility #hypermobile #hypermobilitysyndrome #walking #gym #gymnastics #learning #22months #22monthsold #gymnasium #progress #toddler #toddlerfun 2d

» LOG IN to write comment.

» LOG IN to write comment.

drblessyl The May/June issue of @thedancecurrent is out! In this issue, I write about the dangers of over stretching and the strategies to combine strength training and use of specific stretch techniques for performance. #drblessyl #thedancedoc #healthydancer #dancecompetition #warmup #goals #splits #stretching #middlesplits #flexibility 3d

» LOG IN to write comment.

rubyj0nes on June the 5th i am swimming a mile to raise money for @ehlersdanlosuk please visit my just giving page in my bio to sponsor me and share as much as possible! thank you lovelies 🏼 3d

» LOG IN to write comment.

hannah_and_austin We have had a busy day so far - first stop was gymnastics this morning 🏅which was where we were when we saw your #widn tags - thanks @katey0787 and @sweary_mummy! What are you up to @shelbyville_ @rhiann0ngrace @ohsoamelia ? #gymnastics #toddler #toddlerfun #toddlerclass #hypermobility #hypermobile #hypermobilitysyndrome #learning #playing 4d
  •   katey0787 That place looks great! I need to find somewhere like that near us x 3d
  •   hannah_and_austin @katey0787 it's fab, can't recommend it enough! Look for a gymnastics academy kind of facility and see if they run toddler classes or open it for toddler pay as you go maybe. They're fab! X 3d

» LOG IN to write comment.

perriewinksjewelry Coming up soon - May is Ehler's Danlos awareness month! Often left unrecognized and untreated because of lack of awareness, Ehler's Danlos Syndrome is a rare, genetic disorder that causes faulty collagen and is often characterized by hyper-flexibility of the joints. As collagen is found throughout the body, symptoms of Ehler's Danlos can manifest in a variety of ways throughout the body and its various systems. Awareness of what Ehler's Danlos Syndrome is can help those searching for answers to their unusual symptoms find relief and understanding. Early diagnosis means early intervention and hopefully less negative impact on patient health. It took 8 years for me to get a proper diagnosis, hopefully by simply sharing information it won't take so long for someone else to get the help they need thank you bunches and have a wonderful night everybody! XOXO #spooniestrong #imazebra #ehlersdanlossyndrome #ehlersdanlosawareness #hypermobile #hypermobility #hypermobilitysupport #hypermobilitysyndrome #hypermobilityawareness #mayisehlersdanlosawarenessmonth #spoons #spoonie #EHLERSDANLOS #disabilityawareness #invisibleillness #invisibleillnessawareness #spooniesupport #perriewinksjewelry #invisibledisease #raresyndrome #raresyndromeawareness #zebra #bestrong #workfromhome #eds #beaware #beawarrior 4d

» LOG IN to write comment.

alli79_ 3 months after busting my knee and this is still the fastest I can walk on the treadmill! 4d

» LOG IN to write comment.

graciegallows Despite my battles with my health, with toxic people and thought processes, with a broken health care system, with self esteem and self worth, through all the struggles, I will not quit. I will continue to fight to get better and continue to share my pits, peaks, and in betweens to educate and raise awareness. You will never see me quit. #zebrastrong 4d

» LOG IN to write comment.

sveanor Ny støtte.... Er ikke noe gøy når kroppsdeler som ikke vart til problem før begynner å kødda :( ankelstøtte med skinner innkjøpt. Er så lei av at kroppen gjør vondt å ikke vil fungere som alla andres kropper. Folk skjønner ikke helt når de ikke kan se en sykdom. Håper inderlig at det bare er venstre som skall hoppe ur ledd å gjøre vondt hele tiden å at ikke høyre joinar in... Æsj #eds #ehlersdanlos #støtte #sykdom #lei #sickness #hypermobil #hypermobilitetssyndrom #hypermobile #hypermobilitysyndrome #bindevev 5d
  •   1987rika Det er altid træls når et nyt led begynder at være dumt.... De andre er man ligesom "vandt til".. Håber skinnen hjælper dig. Jeg har en der minder om den på min højre hånd... Dog efter en skade - men Hypermobilitetsyndrom'en gør det ikke bedre... 5d
  •   sveanor Ja men eller hur @1987rika man blir vandt til de gamle smertene å problemen men når de oppstår noe nytt så er det bare så utrolig frustrerende... Har 2 til hendene og men dem bruker jeg mest hvis jeg er i Hagen eller skall male eller noe sådent, mest problem da. teipet fingrene ganske mange ganger og for å holde ledden på plass :p hva gjør man ikke. 4d
  •   sveanor Takk @elinbbf i like måte 4d
  •   1987rika Lige præcis. Det er enormt frustrerende når nye problemer begynder. Man føler bare det er 1 skridt frem og 2 tilbage.. Forhåbentlig bliver jeg snart fri for skinnen.. Tape har jeg også altid et lille lager af 4d

» LOG IN to write comment.