#MyHSDChallenge

[dimancheetoile]

hey guys, it's Ehlers-Danlos Syndrome Awareness Month

I've been living with this disease my entire life, it took me ten years after my initial questions to finally get diagnosed, only to find out I had a rare genetic disease with no cure, no treatment, a degenerative tendency that makes it harder to deal with every single day as your body gives out on you.

Please share this around and consider donating to fund research. The Ehlers-Danlos Society is a trusted entity that does almost monthly conferences and talks to explain in excruciating detail how EDS affects every aspect of your life from your heart function to your ability to work or even your risks during pregnancy and labour and how you're almost guaranteed to pass on this fucking curse to any child you suffer through birthing.

The EDS Society is super transparent about all the research they do and how your donations help, because it sure as fuck isn't gov funded research that cares about finding a solution for us. After all, it's a rare disease so if they find a cure, it won't make them a lot of money to give it to the couple thousands to dozens of thousands of us that live in every country.

For the entire month, I'll be doing simple portrait commissions to donate money to the research done by the EDS Society. If you want something in exchange for your donation, then either DM me or send me an email at amako.sama.ff@gmail.com and provide references for your OC or fanart you'd like a portrait of. Check out my art tag to see my style or my pinned post for my commission info where there are examples as well.

If you also suffer from EDS, you can use May to tell your story, raise awareness, fundraise (you can even get a t-shirt from EDS Society if you raise $60 or more) and in general, help people know more about this, help families better care for their EDS loved ones, and be a positive impact on this community. Use the #MyEDSChallenge or #MyHSDChallenge (depending on your diagnosis) on Twitter, Instagram, Facebook or Tiktok and the Society will reblog your stuff. There are also 31 prompts for you to post about, which you can find on the website. If you want to hear a little about my own story, I have an ehlers-danlos syndrome, disability, disability awareness and EDS hashtags on my blog for you to go through.

Again, reblogs are very much encouraged and appreciated. Please help raise awareness for this burden we have to live with, knowing our own community has to do its scientific research because no one cares about us.

[diagnosed-weird]

May is right around the corner, and it's also Ehlers-Danlos Syndromes (EDS) & Hypermobility Spectrum Disorders (HSD) Awareness Month!

Join The Ehlers-Danlos Society and raise awareness, visit www.ehlers-danlos.com/may-awareness

(Mention 3 of your friends or more here)

[dravenxivuk]

I’m doing this over on Twitter, so let’s do it here as well...

May is EDS & HSD awareness month. 

Day 1. Meet me 

I'm Draven (she/her), I'm 42, was diagnosed with EDS in 2017 after years of misdiagnosis & 'mystery' symptoms. I live with my Wife & our 2 cats. I game, art, knit & crochet.

2. My EDS 

I have Hypermobile Elhers-Danlos Syndrome. Along with joint hypermobility I also suffer chronic pain, concentration problems, sleep disturbance, fatigue, postural orthostatic tachycardia, migraines & gastrointestinal issues

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 8 Prompt: Movement and Activity

Movement and Activity can be very limited for those with EDS, especially those who have more severe symptoms and comorbidities. You may think of exercising as a run around the block or taking a trip to the gym. Others may think of exercise like going to physical therapy and peddling on a stationary bike slowly walking on a treadmill or working with elastic band. Exercise isn't always something that gets you out of breathe or your heart rate way up. For someone with EDS and some other conditions, exercise can take on a totally different meaning. Exercise can be some movements or positions that those who are healthy take for granted and do effortlessly without thinking twice about.

Exercise for us could be as simple as sitting up for a certain amount of time, remembering to change positions more often so we don't get blood clots, one of my exercises was rocking. Sitting on the couch and rocking back and forth or side to side just to get my bones moving a little bit to try to relieve some of my pain. doing light stretches or putting on AFO leg braces and sitting with our legs straight out on the couch to give them a little stretch to prevent furthering of spasticity I am one in a handful of EDS patients who cannot walk at all and is paralyzed from the waist down.

Though many EDS patients may have exercise plans such as walking to the mailbox and back each day, or bouncing on a balance ball, I do not have that ability do such activities and with my spinal issues which insurance will not cover the repair of it can be extremely dangerous for me to do things like this. For me sometimes it just a matter of lying on the couch on my back and trying to slide my foot up so my knee is bent and the bottom of my foot is flat on the couch with as little use of my hands as I can then extend it out straight again pushing with what little I still have in my legs, using my hands as little as possible to get it back straight out on the couch. I will also try this up by sliding it on the couch and trying to extend it by pressing my leg out, using a little help from my hands as possible to pull it back up which is much harder than doing so lying down. Many who are paralyzed or have paralysis have some movement in their legs, especially with a partial spinal cord injury but the movement usually isn't enough to do much with.

I cannot stand or support my own body weight on my legs but on my good days and in socks or shoes without clingy soles I can sometimes slide my foot back on my footplate if I go over a bump or something and my foot slides forward or off. This too is exercise by using what little I have to the best of my ability. I may not be able to lift my leg or move it well but sometimes I can slide it which is better than nothing. My doctors do not like me doing this anymore due to Osteoporosis however I still occasionally will put my KAFO leg braces on which have locks on them to lock my leg straight so my knee cannot bend and simply stand up in them. My legs cant do much as without them my knees would go out and I would go straight onto the floor but they do allow my body weight to distribute into my legs and my circulatory system to get some practice circulating blood in an upright position.

Another issue with EDS is movement disorders which is something I struggle with, sometimes worse than other times, especially in the evenings and when I have done too much. As mentioned in previous posts, the compression of my spinal cord. With so many nerves going through the spinal cord and brain, putting pressure and stress on those nerves result in them misfiring. I actually had this issue as a kid before we knew what it was but at the time it was only in my hand. My wrist would jerk so my hand, on the side of my thumb would jerk up towards my inner arm.

As an adult sometimes my legs will involuntarily kick or I will go spats so my legs won't bend and will hover several inches in front of my chair with my feet twisting inward and upward. I’ll have full body jerks kind of like what sometimes happens when you have those dreams of falling and your body jerks upon waking up but it will happen several times in a row and then several times in a row a few minutes later where my spine goes very straight then flaccid. I will also have facial ticks or full body ticks where the small muscles in my body will start twitching. When this happens in my GI system and respiratory system, it can get really scary because it can make me vomit, unable to swallow anything, give me blurry vision when my eyes start twitching or make it hard to breathe as I cannot control these smaller muscles. Some light stretches can reduce speciosity and stretch these muscles which doesn't reduce the neurological issues but reduces the muscular responses to those.

Movement and activity plans for someone like me may seem too easy or simple but until I can get a surgery to repair some of my neurological, brain and spine manifestations simple is about as good as it gets. The biggest goal of my movement activities is to prevent further sparsity, blood clots and to try to make it so that my heart and autonomic nervous system don't get to a point of no return if we can ever get my surgery approved or another treatment is found. You use it or you lose it so we are trying to prevent me from loosing any more function without going the other way and decreasing my movement through further damage to my spinal cord. It can be quite the fine line between not enough and too much so maintaining that balance is the current goal when it comes to movement and activity and its play in my daily life.

[liltumgrum]

May is Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month

I have Hypermobility Spectrum Disorder. Although once the diagnostic criteria is updated this year I’m sure that my label will be changed to a type of Ehlers Danlos Syndrome. HSD/EDS are genetic connective tissue disorders. To make the long story short, the part of our body responsible for binding, supporting, protecting, insulating, storing reserve fuel, and transporting substances is flawed. Even just one tiny flaw can cause major problems and comes along with a ton of comorbidity. More information here.

I’m going to try to participate on the social media awareness challenge, but make no promises. It may seem silly, annoying, or just to look for pity, however  this sort of thing is what eventually lead me to find a diagnosis. I would probably be dead if other people hadn’t shared their experiences on social media. Speaking of which, here’s an unfortunately necessary reminder: Yes, we are sick. Yes, we are disabled. Yes, EDS/HSD has and will continue to have a major impact on our lives, but we are just as much people as the rest of you. Don’t mistake our decreased quality of life and health for the “quality” of us as people. And please, please, please try not to use us as an excuse to belittle your our experiences and pain. 

Asks are open for any questions. Don’t worry, you’d be hard pressed to find a topic that I’m not willing to talk about. :)

Also, just gonna plop this here->

[stacyspoonley]

#bippityboppityboo @nsmobility RAMP FINISHED! I can even get myself up most of the way with my manual chair so my transport drivers don't have to worry #myEDSchallenge #myHSDchallenge 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿🦓 #COVID #COVID19 #CORONAVIRUS #DONATE #zebrastrong #spoonie #togetherwedazzle #riseup #adapt #ableism #fragilebutunbreakable #ZEBRAFASHION #primaryimmunodeficiency #sewing #DisabledJoy #keepmovingforward #disability #mycrazylife #invisibledisability #lgbt #chronicillness #raredisease #TogetherAtHome #HealthyAtHome #stayhome #mask #plasma 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ (at Lake Ronkonkoma, New York) https://www.instagram.com/p/CAt4MxpAr7c/?igshid=vif2twqymije

[varadasharma]

EDS/HSD Instagram Hop Details + #UseYourCraftStash - Digi Stamps

EDS/HSD Instagram Hop Details + #UseYourCraftStash – Digi Stamps

Hi friends, today I am feeling so honored to be part of a very special event! My Instagram friend (and a crafter I deeply admire!) Natasha Davies is having an Instagram hop for EDS/HSD awareness. You can check out her blog post here. She has also set up a Just Giving linkthat directs funds directly to the EDS.org for anyone that would like to donate. There are so many talented crafters sharing…

[unwanted-life-me]

EDS And HSD: Why Awareness Is Important

EDS And HSD: Why Awareness Is Important It's Ehler-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month so this article will shed light on these conditions #MyEDSChallenge #MyHSDChallenge #ActsofAwarenessChallenge #Blog #Read

While promoting my Ko-Fi page after I saw a prompt to do so on Twitter in a Ko-Fi thread, I randomly came across @LagerdahlPhoto who told me it was Ehler-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. I’d only heard of the latter, so I asked if @LagerdahlPhoto could tell me a bit more about EDS, which they were only too happy to do. After reading the information…

[zebra-warrior]

Would you like to close off EDS Awareness month with a bang? Have some spare change? Wanna donate to an underdog. Please consider this month or any month making a donation to the Ehlers Danlos Society to help with research, education, and awareness for Ehlers Danlos Syndrome. A condition that is incredibly complex yet only a small amount is known about it. Donate here or at The Ehlers Danlos Societys website at ehlers-danlos.com

#myEDSchallenge #myHSDchallenge

[dravenxivuk]

Day 6. What you see and what you don’t see

What you see: bright coloured hair, smiles, walking stick 

What you don't see: days of recovery time for a single trip out, fatigue, pain, daily naps, all the other joint supports, grief for the life I used to have, strength to keep going

[dravenxivuk]

Oops, forgot to put this here yesterday!

3. EDS in a day 

Wake up exhausted, stiff & in pain. Crawl out of bed. Take meds with food & coffee. Get dressed. Rest. Have lunch. Nap. Wake up fuzzy & in pain. Watch streams, draw, game, knit etc depending on spoon levels. Sleep. Repeat

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 3 Prompt: Symptoms)

Unbeknownst to most people in the community and even many in the medical community as most medical personnel never learned about EDS in school or if they have were only taught the very most basic information about it but Ehlers Danlos Syndrome is a systemic condition and predisposes those with it to over 250 other conditions so it's not unusual for someone with EDS to have 20, 30 or even more other conditions caused by it which are called comorbid conditions or comorbidities.

EDS is a genetic condition that affects the structure of connective tissue. There are multiple types of connective tissue but there are also multiple types of EDS so one or more types of connective tissue can be impacted. Connective tissue also makes up at least part of every part of the body so when your connective tissue is faulty and prone to damage that also means so is everywhere connective tissue is located including but not limited to the skin, cartilage, the brain, heart, lungs, GI system, liver, kidneys, bladder, Mesentery system which is the stringy organ that is around your abdominal organs that eases then and holds them in place, lymph nodes, lymph ducts, nerves, blood vessels, blood cells, nerves, bones, bone marrow, joints, tendons, ligaments, muscle sheathing, eyes, ears, nails, hair follicles, spinal cord, sweat glands, respiratory system etc. You name it, it contains connective tissue so anything can go wrong with any part of the body leaving many patients diagnosed with conditions such as conversion disorder, meaning that all of your symptoms are in your head and you're fine for years and more often, decades because we usually get diagnosed with a lot of these comorbidities before we finally find that one doctor who can put the pieces together and say, this isn't in your head, you have Ehlers Danlos Syndrome and those other conditions are very real because EDS is what caused all of them.

Now that we have discussed comorbidities I have dealt with countless symptoms over my life. As a kid it started with chronic pain, migraine headaches, and issues resulting from a compromised immune system because I caught everything going around and usually more than once. I don't remember a holiday as a kid where I wasn't sick or hurt. I was extremely clumsy, unable to run correctly until high-school with the very extensive help of my gym teacher. I was always falling, rolling my ankle, and just in general looking awkward with my body movements. I had multiple gym teachers who would agree that there was something physically wrong with me long before I could get any doctors to listen to my mom or as an adult, myself. I had to take special reading and writing classes because even to this day I cannot hold a pencil well or write with control because my fingers are too hypermobile to control a pencil so my writing is often illegible. I had a very severe failure to thrive, also called juvenile dwarfism, not even growing an inch between the ages of 2 and 12. My parents were told when I was 2 years old that I would be 6’4’’because I was so tall as at one and two years old that people would criticize my mom for carrying me out in public thinking I was 4 or 5 years old when I was only a year or two years old. I was 3’2” from the age of 2 to the age of 12 and of course when I was 12 I was extremely short and was bullied for my size as well as my weight which increased due to inflammation from undiagnosed celiac disease. There were multiple incidences with medical personnel and social workers as a kid because I always had such severe bruising all over my body and they believed I was abused. I didn't lose my teeth, losing only one on my own and at the age of 8 my dentist began pulling out my teeth which left me with dental crowding and requiring braces which were removed prematurely. I dealt with Learning disabilities and have been in glasses since age 4. I would pass out all the time as a kid, starting at 8 years old.

Bullying was a huge issue for me as a kid because I was socially awkward showing signs of OCD as well as being more mature than my peers due to my medical experiences and history with my siblings that forced me to grow up more quickly. That combined with issues such as my clumsiness and height made me the perfect target for bullying. I got what I believe was my first Traumatic Brain Injury when I was 9 years old while hanging upside down on the monkey bars. My bully had another student who had Down Syndrome, climb to the top of the monkey bars and lift my legs so I fell off onto my head.

My second was in the 6th grade. The same bully would bully other kids to help her bully a bigger target of hers which was me. One day I was at my locker between classes. Our lockers were assigned in alphabetical order by last name, of course my bully's last name came right before mine so her locker was directly to the left of mine. My mom tried to get it changed but the school refused. She shoved me down between classes while I was exchanging my books and the two kids with the locker to the right of mine she had help her roll me onto my stomach on the ground, one sat on my butt and held my feet down, the other sat on my back and held my arms down under her feet. my bully yanked my head up so my forehead was on the floor of my locker and I was trying to get out so she had the girl on my back use one of her hands to hold my head down. My bully then kicked my locker door shut on my head over and over again and I went unconscious. There were two teachers in the hall at the time but they just waked into the classroom when it started. I woke up and the hall was empty. I went to the office and told them I needed them to call my mom, I needed to go home and explained what happened. They called my mom and instead of telling her the truth they told her she needed to pick me up because I was acting strange. She came and got me and found out what happened getting me treatment.

She then took me to the school a few days later since the doctor didn't want me to return for so long (I apologize I don't remember a lot from the two weeks following this so I'm going off what I was told so the exact time I was out of school, I believe was around two weeks but I'm not sure. Anyhow at the school, we met with the principal and office staff who denied any teachers were in the hall or that any of this happened. My mom demanded to see the recordings on the cameras as a hall came in at a T right behind my locker so that camera faced my locker as well as one at each end of the hall my locker was in. They tried to tell her all three cameras were broken. My mom wasn't buying it so they tried then saying the recordings were gone. they went round and round and the school flat out refused to show her the video. My mom demanded that the girl who did this be punished because she has been asking for the school to help me since I was in the first grade and this girl started bullying me but they always fail to do anything.

They tried to then give me an in school suspension which my mom refused to let them do. They still went behind her back when I returned and made me take peanut butter sandwiches to the kids in detention during my lunch as punishment because they were mad my mom came in to question the incident. They refused to punish my bully in any way and when my mom demanded to know why, they said her mom and grandmother graduated from the school so she has a lot of history with the school which years later we found out after me and 9 other kids that I know of and who knows how many others, ended up being pulled out of the same school because of her bullying that having history at the school actually turned out to mean, she was black and they would not punish her because of her color. At the end of the school year my mom pulled me out of the school not sure what to do since back then they didn't have any kind of free online schooling so pretty much everything costed money which is when my grandma stepped up and told my mom she would help because there was no way I would be going back to deal with more bullying.

I had a ton of intestinal issues having to start colonics at around 10 years old and get my first colonoscopy around the same time. As a teen I really went down hill, struggling to eat because I had very severe nausea and cramping pain upon eating which made many of my friends believe I was anorexic but I went years without being diagnosed with gastroparesis. I started having thyroid issues and finally diagnosed with food allergies at age 14, Chest pain, palpitations, arrhythmias and trouble breathing around age 15 and seizures and cardiac arrest events at age 17.

At age 19, right before starting college I lost the ability to walk with no reason why and was sent to physical therapy to learn to walk again. The hospital visits continued in college from the seizures, emergencies from my thyroid levels going sky high or bottoming out, I started having issues with low sugar, rectal bleeding and more GI and Muscular Skeletal issues that again came to the attention of a physical education professor I had in college. The cardiac arrests continued to happen and I got an emergency pacemaker put in at age 23. Also lost the ability to walk a second time and re learned during this time.

After graduating and starting working I really went down hill. My nerve pain got so bad I could hardly tolerate it and had a lot of issues with muscle spasticity. Passing out and dizzy spells got worse, seizure meds aren't working muscle weakness got again worse in my legs and I started literally wondering if I was dying, I had such severe fatigue that I slept every moment I wasn't working, bleed very badly during my period or with just mild trauma worrying my dentist so badly that he sent a letter to my doctor suggesting a possible bleeding disorder. I was going into shakes from low sugar and low sodium frequently but at the time had no idea why I would start shaking multiple times a day. Myoclonic epilepsy started and has progressively gotten worse, Dystonia started up, I started getting intestinal obstructions more often and more gastroparesis symptoms with the nausea and vomiting, sometimes cyclic vomiting. I developed a limp and went onto forearm crutches which eventually progressed to paralysis.

I have always had issues with dislocations of joints and spinal manifestations like scoliosis, Craniocervical and Atlantoaxial instability. I’m prone to non cancerous masses that could be cancerous one day including masses in my breasts, heals and between the vertebrates in my spine. My memory has deteriorated and I now have issues which I call temporary blindness when I turn my head a certain way which pinches my already compressed brainstem kinking it off so my vision is interrupted. With Systemic Mastocitosis I deal with allergic reaction type symptoms such as anaphylaxis, overproduction of mucus, coughing, hives, swelling, rashes, itching, hot flashes, flushing and more. I overheat and have hyperhidrosis. I have muscle spasms from the paralysis, dry mouth from the meds, in addition to the heart arrhythmias and trouble controlling my body temperature from the damage to my autonomic nervous system failure I have swelling of my abdomen, extreme thirst, bladder retention, abdominal cramping and more.

There are endless symptoms associated with EDS and it’s comorbidities which has a huge impact on your social life. You can't do the things you used to do and may come up with new hobbies and later deal with the grief associated with losing the ability to do those hobbies, in turn having to find new hobbies. You lose all or almost all of your friends because they don't like what you have become, the things you used to be able to do with them and no longer can, they don't understand if you need to cancel plans, when you lose the ability to drive they drop you cold because they don't want to pick you up many of us deal with the realization of how badly we wanted friends growing up due to our social awkwardness that resulted from our illness, time spent in the hospital, maturing more quickly, as well as the result of decades of medical abuse and neglect which in most of us has resulted in complex PTSD.

Almost all EDS patients are either on the Autism Spectrum, diagnosed with Obsessive Compulsive Disorder which some associate with social awkwardness and also the intense need for us to please people meaning many EDS patients were known as extremely hard and dedicated workers when working or in school as well as very dedicated to friends and families. We basically give our friends the clothes off of our backs meaning that most of us unknowingly befriend people who use us and are in take take take relationships where we give everything we have into a friendship or relationship while the other person gives little back resulting in most of us losing all or almost every friend we had when we get sick and no longer have anything to give. When we are no longer able to do for others those people quickly jump ship leaving us with no friends. Most of us have this very similar personality type due to our history of growing up quickly along with the shared comorbidity of Autism, OCD, and Complex PTSD.

There are countless symptoms associated with EDS and they are different for each individual. Even in my case alone these are only the tip of the iceberg when it comes to symptoms I have experienced alone so EDS isn't an easy condition to live with physically or emotionally and the diagnosis can be quite the pill to swallow with little understanding from friends, sometimes family or even the medical community.

[stacyspoonley]

Another hospital stay without nutrition bc of my #anaphylaxis and #gastroparesis down. One day. One day. #mycrazylife #myEDS #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #systemicmastocytosis #EHLERSDANLOS #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #myhsdchallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy (at Stony Brook University Hospital) https://www.instagram.com/p/By78GgBA0EM/?igshid=n4vno0pyrxnv

[stacyspoonley]

Call this frosty bitch Ice Queen bc she's not really getting any other #postop pain management #mycrazylife #myEDS #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #myhsdchallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy (at Stony Brook University Hospital) https://www.instagram.com/p/By6qifnArEq/?igshid=lh5s2kijaups

[stacyspoonley]

He may be a day late but my love is with me now and is certainly not a dollar short lol #TrigeminalNeuralgia #surgery #mycrazylife #myEDS #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #myhsdchallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy (at Stony Brook University Hospital) https://www.instagram.com/p/By6R4TBAfdh/?igshid=15m2631c9uh52

[stacyspoonley]

DIET ORDER!! I'm in 9 North if anyone wants to visit #TrigeminalNeuralgia #surgery #mycrazylife #myEDS #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #myhsdchallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy @ehlers.danlos @idfcommunity @dysautonomia @tztheidfzebra (at Stony Brook University Hospital) https://www.instagram.com/p/By6ITAjAQ5X/?igshid=1664v9ohqxab8