EDS & HSD Awareness Month May 2024 @ehlers.danlos Day 9: #throwbackthursday Throwback Thursday to my time in Switzerland 🇨🇭 This team-building activity was a game-changer for me. This simple exercise was a confidence boost I desperately needed. Living in Switzerland and being part of a field school program opened doors I never thought possible. 🌟 This experience taught me that seeing others' opinions of me as a threat was creating a barrier to my own inclusion. I had to shatter my own doubts and fears, realizing that I was more capable than I kept telling myself. I was stuck in a mindset focused on what I couldn't do physically; and assumed that’s all people saw me for.However, this group of people helped me gain confidence by treating me with respect and kindness. With this newfound confidence, I was able to speak up and be heard. 💪 Breaking barriers isn't just a one-time event; it's a continuous journey of self-discovery and growth. 🧡 Quote to elaborate on this: ______________________ “The experience of pain is often experienced as a punishing, isolating element in a person’s [life].” (Camerota, Mariani, et al. 2023) Pain can change how we perceive the world and our interactions with it. When we're used to unpleasant stimuli, we become more guarded. The more pain we feel, the greater the negative effects of dehumanizing internal dialogue can become. Higher levels of pain are linked to increased self-imposed isolation and decreased self-care. (Camerota, Mariani, et al. 2023) https://doi.org/10.3390/brainsci13071042 ______________________ #ThrowbackThursday #TeamBuilding #ConfidenceBoost #SwitzerlandExperience #FieldSchoolJourney #BreakingBarriers #SelfBelief #GrowthMindset #OvercomingObstacles #TeamSuccess #EDSAwareness #FitnessJourney #Inspiration #NeverGiveUp #myedschallenge #myhsdchallenge #may2024 #photoadaychallenge #eds #edsandstrong #elhersdanlossyndrome #ehlersdanlos #mystory #edsawarenessmonth #edsandme #hEDS #thisiseds #TogetherWeDazzle #anytimefitness
I've been getting a nice tab on my front side by lying on my zero gravity chair in the sunshine. Today i decided it was time to lie on my stomach in the sun, so i set up my old beach blanket and a wedge pillow on the deck. A few days before i started tanning this year, i had a dream in which my legs were fully tanned. It didn't feel like a prophetic dream at the time but I suspect it was, because this is the first time in a decade i have been able to tolerate the sun without having an allergic reaction. At the time of the dream, i didn't know I'd be able to tolerate getting a tan this year. This is the first time in a decade I'm not pasty white all over. As much as i tried to convince myself how much healthier my skin was by not getting any sun, i have to say, i feel a lot better with a bit of colour! . . . . . . . #PwME #MillionsMissing #MEcfs #MyalgicEncephalomyelitis #MCAS #InterstitialCystitis #OvarianCysts #POTS #CCI #AAI #hypermobility #hEDS #EhlersDanlosSyndrome #neurodivergent #AuDHD #BabeWithAMobilityAid
Just a member of the tired zebra club finding zebra things all over Spain & Italy during our honeymoon trip and taking a moment to stop and appreciate that pattern in a different light. (Whilst sporting multiple EDS awareness stickers of course.) #edsawareness #heds #eds #ehlersdanlossyndrome #yourlabslookfine #tiredzebraclub #ehlersdanlositalia
Day 9 of raising awareness for @ehlers.danlos syndrome and it’s #throwbackthursday 🧡 - These are some very very special memories I feel so lucky to share! - Learning Ariel Hoop and doing my first ever photoshoot was an ACHIEVEMENT! When I tell you I screamed when I saw what they looked like - I cannot believe that’s me 😭🥹 - Bathing with elephants in Thailand, such a precious moment. But please make sure if you do this, you’re visiting an actual elephant sanctuary and don’t get mis lead like I did at the time 🙈🧡 - Meeting my childhood best friend for the first time in YEARS half way across the world in Bali! I spent ages waiting for that moment and when it arrived, it was so lovely 🥰 - Omg seeing the The opera house in Australia - this was a crazy moment. I was very home sick but I stayed down under for 5 months and pushed through those feelings and had the most incredible journey! - Making a dream come true and seeing one of my favourite animals in the wild - The Manta Ray 🥹 I genuinely cried, it was amazing. - Visiting Rome for the first time and seeing the colosseum! And then falling so in love with the city I ended up going back four times so far 😅 - Taking a trip to Iceland and experiencing one of the most amazing countries I’ve ever been too. Not to mention the Blue Lagoon was the most incredible place. - Going scuba diving for the fist time and loving every second of it. On my second dive in Thailand I saw my favourite sharks - The White Tip Reef sharkie 😍 🦈 - Laughing so hard my stomach hurt at an indoor water park in Budapest with the love of my life on my birthday! - Going to the most beautiful Spa in Milan with my best friend - also tripping up over a floor mat in a super quiet relaxation room and nearly pissing myself because we were laughing so much! - #MyEDSChallenge #MyHSDChallenge #ehlersdanlossyndrome #ehlersdanlos #heds #hypermobility #dynamicdisability #disability #disabilityfriendly #chronicillness #chronicillnessawareness #potssyndrome #raisingawareness #geneticdisorder #veds #ceds #hsd #medical #womenshealth #wellbeingwarrior #mentalhealthmatters #traveladdict #beautifuldestinations #worldwide #arielhoop
HSD/EDS Retreat November 7-10, 2024 Join Patty, Robyn, and Paige at a Namastay Retreat Center near Zion National Park to learn holistic self management strategies and basic health tips for those with HSD/EDS. Check out Jeff will provide world-class cuisine and a cooking class catering to our abilities and restrictions many of us have with these conditions. 🧘🏻♀️Close to the beautiful scenery of Zion National Park 🧘🏻♀️Guided gentle movement classes with individualization if needed 🧘🏻♀️Group discussions on healthy holistic management ideas for those with HSD/EDS 🧘🏻♀️Health influenced meal plans designed for our population and activities 🧘🏻♀️Beautiful accommodations to enhance relaxation and to help destress 🧘🏻♀️Classes and talks led by three well versed HSD/EDS specialists Click on our retreat link in our bio for additional information. #edshealth #ehlersdanlossyndromes #ehlersdanlos #edsstrong #edswarrior #edsathletes #edsathlete #zebrawarrior #zebrastrong #zebraathlete #hypermobilityspectrumdisorder #hypermobilityspectrumdisorders #butyoudontlooksick #invisibleillness #heds #hedsstrong #hedsawareness #edsawareness
Those wittow wips 🥹 #servicedog #servicedogsofinstagram #pots #hEDS #psychiatricservicedog #englishmastiffsofinstagram
#myedschallenge Day 9 Throwback Thursday A big throwback for Paige, Robyn, and Patty. Some fun photos for you all to see our small selves back in the day. Since these photos many years ago, somehow we each ended up on a similar path to facilitate healing journeys for others, especially those with HSD/EDS. We can get stuck in the busy lives and seriousness of the moment at times, especially in the work we do. But finding time to breathe, and laugh, and play as we used to may be even more valuable now. Find some time to think like a care-free kid would. Positive and fun eustress is good for the soul ❤️🦓 #ehlersdanlossyndrome #zebrastrong #zebrawarrior #ehlersdanlosawareness #ehlersdanlos #eds #edsawareness #edsstrong #edswarrior #hedsstrong #hedswarrior #hedsawareness #heds #hypermobileehlersdanlossyndrome #hypermobilitysyndrome #HypermobilitySpectrumDisorder #hypermobilityspectrumdisorder #invisibleillnesswarriors #invisibleillness #togetherwedazzle #my #hard #myhsdchallenge #MyHSDChallenge #edseducation #edsphysio #edsphysicaltherapy #butyoudontlooksick #zebraathlete #chronicillness The Ehlers-Danlos Society
Hydration Check-In! 💧 Have you prioritized water today? Staying hydrated is not just a suggestion—it's a game-changer. Adequate hydration helps regulate blood volume, mitigating symptoms like dizziness and fatigue. Remember, every sip counts. 💦 #pots #posturalorthostatictachycardiasyndrome #mcas #mastcell #dysautonomiaawareness #potsie #spoonie #spoonieproblems #eds #potsawareness #POTSSyndrome #POTSAwareness #dysautonomiawarrior #HEDS #chronicillness
May is Ehlers-Danlos Awareness Month! 🦓♿ Many people with hEDS and disorders don't realize they are disabled until later in life and struggle to access diagnoses or be heard by medical professionals. Because hEDS is seen as a rare disorder by the medical industry, many doctors hesitate to diagnose or treat for it; however, a lot of the perceived rarity comes from how few people are diagnosed, creating a vicious cycle where disabled individuals are barred from assistance. Increased awareness via social media has been helping people in the community recognize and identify their symptoms for the first time. Do you have Ehlers-Danlos Syndrome, or any of its symptoms? How did you find out? What has your experience been with accessing treatment? #ehlersdanlossyndrome #eds #heds #hypermobile #hypermobileehlersdanlossyndrome #stretchyskin #jointhypermobilitysyndrome #connectivetissue #ehlersdanlos #disability #disabilityrights #disabilityawareness #accessability #invisibledisability #raredisease
These are just some of the many tools people with hEDS use to manage their symptoms! What would you add to this list? ID: Products for Managing hEDS Symptoms Braces Ring splints Kinesiology tape Compression garments Vitassium electrolytes, for people who also have certain types of dysautonomia Pain patches and cream Heating pad Ice gel packs TENS machine Epsom salts Mobility aids U-shaped pillow Neck pillow Weighted blanket Dry shampoo and wipes #Vitassium #Dysautonomia #DysautonomiaAwareness #DysautonomiaWarrior #AutonomicDysfunction #AutonomicNervousSystem #POTS #POTSawareness #POTSie #PosturalOrthostaticTachycardiaSyndrome #OrthostaticHypotension #VasovagalSyncope #NeurocardiogenicSyncope #InappropriateSinusTachycardia #EhlersDanlosSyndrome #EhlersDanlos #EhlersDanlosAwareness #EDSAwareness #HEDS #HypermobileEhlersDanlosSyndrome
A couple of weeks ago, I went to my first ever Pride event! 🏳️🌈 Although there were inevitably challenges, I had such a lovely day ☀️ To make it a bit more accessible for me, I borrowed a rollator (also for the first time) and it made such a difference! I still had the support of holding onto something whilst walking, and I could sit whenever I needed to👩🦽(why isn’t there a rollator emoji?!) I’m definitely going to use a rollator more frequently so that I can have some more adventures! My dream would be to save up for a @rollzint motion but they’re super expensive! 🌈🫧🦓 #babewithamobilityaid #chronicbuticonic #mobilityaidbabe #mobilityaidsarefreedom #pride🌈 #queer #disabledandqueer #disabledandcute #hEDS #ehlersdanlos #actuallyautistic
There is a LOT to know about hypermobile Ehlers-Danlos syndrome ( #hEDS ). From the symptoms to the #genetics to the #healthcare recommendations. Did you know that a genetic counselor can be an integral part of your healthcare team? We are specifically trained (1) to translate complex #medical issues into everyday language AND (2) in patient advocacy. It is a common misconception that genetic testing for hEDS is not useful as the genetic cause is unknown. While the underlying genetic etiology remains elusive, did you know that to meet the diagnostic criteria for hEDS, you must exclude other heritable and acquired connective tissue disorders. This can only be done through genetic testing, and here’s where a genetic counselor can help. If you are considering pursuing #genetictesting or have genetic test results you don’t understand, talk with a #geneticcounselor. We explain your genetic testing options, the risks, benefits, and limitations, and ultimately what a positive, negative or variant of uncertain significance means for you. We’re here to help – it’s what we do. www.storkgenetics.com
POTS & hjärndimma Kognitiv dysfunktion är nästan ett universellt fynd hos POTS-patienter, ca 80 till 90 % rapporterar symptom på kognitiv dysfunktion och beskriver det ofta som: ”svårigheter att tänka, koncentrera sig eller vara uppmärksam, problem med att komma ihåg saker, grumlig eller suddig känsla i huvudet ”hjärndimma”, och har problem med att hitta rätt ord.” Dessa dysfunktioner är inte begränsade till stående position utan kan inträffa även när patienter ligger ner eller sitter, vilket begränsar deras förmåga att gå i skolan eller arbeta. Studier har funnit att POTS-patienter har brister inom specifika områden av kognitiv funktion inklusive selektiv uppmärksamhet, kognitiv bearbetningshastighet och exekutiv funktion. Dessa problem observerades även i sittande läge. Detta kan tyda på att den kognitiva dysfunktionen i POTS inte beror på den ökade hjärtfrekvensen och symtomen vid stående, utan snarare kan återspegla en del av själva sjukdomen. Källa: https://dysautonomiainternational.org/blog/wordpress/cognitive-dysfunction-and-brain-fog-in-pots/ #Dysautonomia #DysautonomiaAwareness #DysautonomiaWarrior #AutonomicDysfunction #AutonomicNervousSystem #POTS #POTSawareness #POTSie #hypermobility #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #EhlersDanlos #HEDS #hypermobilitysyndrome #edslife #MECFS #MyalgicEncephalomyelitis #Fibromyalgia #MCAS #Gastroparesis #ChronicIllness #Spoonie #SpoonieLife #InvisibleIllness #ChronicFatigue #Dysautonomi #CRPS #chronicpain #posturaltortostatiskttakykardisyndrom #potsielife
I declare my first train journey with my mobility scooter a success 👍🏻! A big thank you to all the lovely people at @se_railway Passenger Assist who helped me. I'd expected it to be so stressful, worrying whether it'd all work as it should. Although being reliant on someone with a ramp to be there to get me on and off was and probably always will be a bit stressful, it was nothing compared to the benefits from putting my body under less strain. I'm very tired but happy! #train #traintravel #spoonie #spoonielife #chronicillness #chronicpain #hypermobility #hEDS #POTS #invisibleillness #invisiblevisible #booknerd #booklover #bookworm #bookstagram #books #bookstagrammer
My personal journey with EDS.. so here it is, Part 1 Some symptoms I’ve had for as long as I can remember such as the stretchy skin, bruising easily, frequently sick, POTS, levels of depression/ anxiety & Hypermobility. I have always had my splits without having to train them. Looking back now I can see the next big changes happening in puberty around the time I quit gymnastics. Issues with sleep (later diagnosed with upper airway resistance- a sleep disorder), fatigue, a full dislocation without being induced by trauma, skin issues, allergy issues, increased depression & anxiety issues. I have led a very active & health minded lifestyle since childhood which I attribute to symptoms potentially being minimized from being triggered to increase further. My next big shift in symptoms came in 2019. This was following coming down with Covid in February & then some very stressful and challenging life circumstances later that year. Chronic pain began in my back, neck, jaw tightness, & more issues with fatigue. I sought out help from massage, chiropractic, acupuncture & functional medicine and nothing seemed to resolve the issue. I began to notice things becoming more hypermobile, and injuries increasing in frequency & taking a LONG time to heal (sometimes up to a full year or more). Things were popping more frequently & sublaxing (especially with my ribs). GI issues appeared for no reason & out of the blue. A trip to the ER for severe abdominal pain revealed a likely ulcer where the stomach meets the small intestine, which continues to randomly flare. My allergy issues & sensitivities have also increased & grown to include synthetic fragrance like perfume, cologne, candles, & wax burners. I was also officially diagnosed with MCAS and POTS. We have had to adjust our home environment to reduce triggers & I limit where I go publicly & carry masks to help limit reactions. I looked for a doctor who could evaluate me for at least half a year or more, trying to find one who would accept my insurance, but was unsuccessful with the insurance piece. We are slowly creating a team of specialists to help manage treatment. #eds #edsawareness #hEDS #edsawarenessmonth
Snapshots of my life throughout this spring semester 💐🕊 My spring semester is officially over now and I could not be more happy! I haven’t been able to post too much on here over the last several months due to school, work, and my health. So I decided to do a recap post of everything that’s happened in my life over the last four months! Here is a recap of the past four months: - I was a part of the @Pepper.You Valentine’s Day Campaign for their ‘All Heart’ Jewelry Collection. I am so happy that I had the opportunity to be apart of this campaign alongside other wonderful people as they are so nice and an amazing company! - I went to the Billy Joel & Sting concert back in February. - I have had the worst continued flare-up of my symptoms since before I had my diagnoses which led me to miss more than half of my in-person classes this semester. - I went to Helen, GA, for spring break. - I continued working in Adobe Photoshop and Illustrator as well as began learning motion graphics in After Effects and 3D modeling in Blender as part of my digital imaging class. - Finally, I managed to finish my classes with all A’s this semester. Now that I have a bit of break I am hoping to post more on here! Though I am entering the season of doctors appointments since I do all of them during my breaks in between school, so I guess we shall see lol. I hope you all have a low-symptom/pain day 🫶🏻 *Alt Text Available* #StayPositive #MakeTheMostOutOfLife #InvisibleIllness #ChronicIllness #ChronicallyIll #Disabled #DisabledAndCute #DisabledAndProud #POTS #EDS #hEDS #EhlersDanlosSyndrome #MALS #MedianArcuateLigamentSyndrome #MCAS #Endometriosis #ChronicFatigue #PotsAwareness #AccessibilityMatters
Day 9: Throwback Thursday Enjoy a couple of pics of 9 year old (ish) Rosie zooming round Chester zoo in my wheelchair... it had cool spider wheel guards. Growing up I did use a wheelchair to help reduce my pain, but I hated it. I would only use it if I absolutely had too. Nowadays, I'm much better at pacing myself and knowing how to manage my pain, so only use a crutch. #heds #eds #myedschallenge #throwbackthursday
EDS awareness month 🦓🧬🤍 Let’s be honest, Ehlers-Danlos syndrome is confusing. Between the multiple subtypes, different collagen mutations, and varying symptoms it makes for a very complex disease. But this only makes education and awareness on the condition all the more important. #stoma #ostomy #colostomy #endo #endometriosis #hEDS #eds #ehlersdanlos #tetheredcord #chronicillness #chronicillnesswarrior #premed #ileostomy #medschool #visceroptosis #medstudent #EDSawarenessmonth #ehlersdanlossyndromeawarenessmonth #edsawareness
I am a hypermobile human, friends. Feeling all sorts of feelings... But I'm happy to have an answer. hEDS- hypermobile Ehlers Danlos syndrome is my newest diagnosis. I have bursitis in my hips and tendonitis in my arms.. which the rheumatologist believes has been caused by hEDS and I'll go to physical therapy to treat those issues. Um.. yep! That's what I know currently. #chronicillness #eds #hEDS #hypermobility #HSD #hypermobileehlersdanlossyndrome
Day 9 - #ThrowbackThursday ! First 4 photos: @anni.eriika 📸 Locations: Slide 1: Plitvice Lakes, Croatia Slide 2-4: Finland Slide 5-6: Plitvice Lakes, Croatia Slide 7: (you guessed it) Finland I wholeheartedly love these photos. They remind me of a time where my chronic illness related pain hadn't fully formed to the present day extent, I wasn't in too much pain and I was able to walk and hike a nice amount. I had the most adventurous times with Anni in fact. She absolutely pushed me in many ways to grow as a person, and these memories evoke positive times of unity, strength, recovery, nature and love. However, since this is an EDS + HSD awareness month post, let's change the viewpoint for a second. This throwback is bittersweet, because whilst all these photos are stunning, core memories which I hold closely to my heart - it also hurts to know it's unlikely I'll be able to do these kinds of adventures again without my hEDS, PoTS and other physical conditions *significantly* improving. It IS possible. I hope. It's lovely to know I made these memories before coming out, but now I want to remake some memories and make even more as my authentic self! It's a great motivator. I'm being very hopeful 🥹 Of course I can medicate up🍃, be on pain killers and try and choose to do the more accessible hikes or nature reserves etc. Nature is so important to me and actually helped decide my name. I absolutely would love to reconnect with that side of myself! Have you travelled much?🌞 I wanna hear about you now! Be gentle with yourself, Forest 🦓 🏷: #MyEDSChallenge #MyEDSStory #HSDawarenessmonth #EDSawarenessmonth #hEDS #hypermobileehlersdanlossyndrome #hypermobility #zebrastrong #ehlersdanlos #EDS #togetherwedazzle #plitvicelakes #Croatia #Finland #nature #hiking #photography #photographer #disabledphotographer #travel #DisabledPride #travelling #wonderlust #finnishforest #finnishsummer #pretransition #pretestosterone #ftmtrans
How it makes me feel Expansive yet contracting Four years, for years. Heal. My annual assessment of objective change. Four little squares. Photos taken, head on, not meant to flatter but to tell the unfiltered story written in the flesh and bone and blood of my face. Even in the midst of being treated for facial cellulitis and raging allergies to springtime pollens, I see the progress, the shift, the effort, the movement forward, always forward. Feeling grateful today. May, historically, tends to be the worst month for my overall health chronics and crises. So far it’s a pretty good month. All the changes I’ve made have made it so. Healing “inch by inch” as my friend Lisa likes to say. Me, I tend to view the world through the process of expansion and contraction. Breathing a bit easier this month, this year. This is everything. #inchiechallenge2024
May is Ehlers Danlos awareness month. I know I rarely interact with social media, but recently my cardiologist encouraged me to share more of my experiences and what I’ve learned on this journey in the hopes that this information could help someone else get diagnosed sooner than I did — so even one person might not have to go through what I’ve gone through. I like to joke I am simply from the fae realm and my body just doesn’t do well in this atmosphere/gravity/environment 😅 because if you can laugh about it all and embrace a touch of delusion it’s easier to accept right? It took me 24 years, multiple injuries, ER visits, CT scans, MRIs, dozens of medications, and 50+ specialists to finally get diagnosed with Hypermobile Ehlers Danlos syndrome, Neurogenic orthostatic hypotension, and Mast cell activation syndrome — among about a dozen other random comorbidities. I still can’t find a doctor to treat my hEDS, but in the past year I have started to put together a team of specialists who are supportive, knowledgeable, and kind. Most of all they believe me and are trying to fight for me. If you are struggling with a chronic illness do not give up the search for help. Do not accept the medical gaslighting you are subjected to. Ehlers Danlos syndrome isn’t just “flexible joints”, Pots isn’t just “dizziness”, MCAS isn’t just “allergies” — these are devastating conditions that affect every system of your body and must be monitored. There are no cures, but there are so many treatments and methodologies that can help you begin to live your life again ❤️ #edsawareness #hEDS #EhlersDanlosAwareness #potssyndrome #mcas #dysautonomia #chronicillness
Day 9️⃣ of awareness! Some days are better than others. 🩵🦓 #hEDS #ehlersdanlossyndrome #dysautonomia #hypermobilityeds
Day 9: Throwback Thursday “Back when life was all fun and game” When you look back at your old life and miss that person, miss who I was miss the healthy person I was! This can be hard and when I first diagnosed It was hard to accept that I’ll never bee that same person!! Having to learn my new life, hospital appt, having a disability, relying on your partner to help you simple day task when I’m having a bad day!! 😢 Everyday is different and no day will ever be the same but I’ve got to learn to live on the body I’ve now got! 🦓🥄🧡 #zebrawarrior #ehlersdanlossyndrome #eds #hsd #heds #edsawareness #edswarrior #throwback #throwbackthursday #ehlersdanlos #ehlersdanlosawareness #edsawarenessmonth #mayisedsawarenessmonth #weneedtospeakup #disability
Neck feeling tight? 🔥Comment “Neck” and we will send you a free Neck Series to your email that will help you gently build strength in the neck. Stretches and massages are great for temporary relief, but when combined with gentle strengthening, will help to create a lasting change. I am sure many of you have stretched or massaged a tight area of the body and, when you wake up the next morning, you find it to be just as tight as it was the day before. If you do stretches and massages for a week and nothing changes, it is time to start trying to strengthen the muscles around your neck. The last exercise in this series, neck curvature, feels great for many people; however, you need to find the right-sized object for the job. Katie is a much smaller person than me, so putting her neck over this green roller is not realistic for her. She instead feels more relief when putting her head over a cervical pillow or another neck pillow that is more gentle. Even the squishy gray balls in the video may feel better for a smaller neck. If you use something like a mobility stick, barbell, or broomstick, this may be incredibly aggressive for the neck, so start with something that has a thicker diameter. If you have a disc bulge/herniation in the neck, the neck curvature work may feel REALLY good. Take it slow and do short periods of time to test. Make sure to fully relax and control your breath in all of these exercises. If you are massaging so hard that you are holding your breath and tensing up, you probably aren’t going to get much of a “release.” Let us know if you have any questions! Ball is from @tuneupfitness @the.shirtlessdude #neckmobility #neckmassage #selfmassage #selfcare #neckstretch #stretch #neckpain #herniation #heds #hypermobility #hypermobile #eds #hsd
A popular musical virtuoso, Nicolo Paganini (1782-1840), was said to have performed feats with the violin that were impossible without his hypermobility, flexibility, long fingers and limbs. He was dubbed “The Devil’s Violinist” and “Rubber Man.” Whether he had traits of #hypermobilitysyndrome, #EDS ( #hEDS), Marfan’s, or both, these genetic anomalies helped boost Paganini’s career. Unfortunately, this may have also been the reason for the chronic poor health he endured throughout his lifetime. The world-renowned violinist suffered from many illnesses and long recoveries for simple maladies, eventually passing away after internal hemorrhaging without injury. Community & resources are available to help you or a loved one overcome the daily struggles with EDS & HSD. Find more facts like this in @tamingthezebra - a resource guide for both HSD & @ehlers.danlos patients and providers. Available on #amazon - link in bio 🤍 Art by @chrispurdin
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Living with multiple conditions is difficult to say the least! What about histamine intolerance? Recently, my neurologist and I have been having discussions regarding diet and using nutrition and eating specific food like low FODMAP. When he asked me what foods I reacted to my answer was strawberries, tomatoes, spinach, pineapple and I'm not sure what else. He then passed me some literature on histamine intolerance Not only do I live with MCAS, a result of hEDS, but also have histamine intolerance So how do I deal with this? Well, to be honest, I don't really deal with it well. I'm not even sure which foods to restrict even though I have an app to help me make safe choices These conditions cause problems with cognition, making it exceptionally difficult to plan or problem solve Truth is, I walk around feeling drunk most of the time and I don't even drink! The buzz is no fun and I've been buzzing since late 2019 This may be due to histamine and mast cells being triggered by food, weather, emotions and sleep disturbance Who ever thought you could be "allergic" to your own feelings and the weather??? Wild What are your triggers? #chronicillness #hEDS #ehlersdanlossyndrome #comorbidconditions #histamineintolerance #mastcellactivationsyndrome #MCAS #triggers #diet #nutrition #foodismedicine
Dance was and will always be a huge part of my life! I miss it so much but I’m so thankful for the experiences I had 🤍 I always thought my flexibility was due to me being a dancer, but it’s been over 6 years since I had to give it up and I still have my left split down perfectly 😅 I also remember my dance teacher would always ask if I’m double jointed #myedschallenge #throwbackthursday #showyourstripes #iamazebra #eds #togetherwedazzle #heds #ehlersdanlos #edsawareness #dyspotsiewarrior #dysautonomia #invisibleillness #dysautonomiaawareness #wegotdys
Me: Hey, can we get some stuff done today? My Body: Can't. We need that energy for Pain. Me: Ok, but what if, Instead, we did Tasks? My Body: Let's compromise and do More Pain. Me:That is not a---- My Body: More Pain it is! Good Talk. #chronicpain #fibro #heds #eds #chronicillness
EDS Awareness Monat Tag 9: #RückblickDonnerstag #throwbackthursday #bimaxop #bimaxsurgery #doublejawsurgery @ehlers.danlos #myedschallenge #heds #edsawarenessmonth
"Don't be pushed around by the fears in your mind. Be led by the dreams in your heart." Roy T. Bennett Fuel your aspirations with courage and determination. Remember, every step toward your dreams is a victory over fear. 🌟 Happy Tuesday, everyone! . . . . . . #EDS #hEDS #HSD #lifecoach #hypermobility #migraine #womenshealth #health #wellness #quote #life #mentalhealth
Day 9 #throwbackthursday. Before I was diagnosed with EDS, I thought it was “normal” to pose for pictures where I look like I literally put my head on my body backwards 🤷🏻♀️ #myedschallenge #ehlersdanlossyndromeawareness #edsawarenessmonth #edsawareness #heds #hypermobility #edszebra #edswarrior #eds
Day 6: Today, we went for two small walks in Germany, and it was beautiful yet again. I'm completely exhausted at this point, and my body is killing me, but I'm going to enjoy the last few days no matter what. Now we're going to rest up a bit, and then we're going to watch Eurovision song festival because I'm obsessed with that. PS: If you're ever planning on visiting Czech, beware of the enormous amount of ticks that will be bothering you and your furry friend because there are insanely much here. Good thing we came prepared. #servicedog #assistancedog #hulphond #assistentiehond #servicedogsofinstagram #assistancedogsofinstagram #adlhulphond #fns #fndawareness #mobilityservicedog #heds #ehlersdanlossyndrome #dog #hond #dogs #dogsofinstagram #dogphotography #huisdierinhetzonnetje #petsplace #ptsdservicedog #psychiatricservicedog #spanishwaterdog #spanishwaterdogsofinstagram #waterdog #spaansewaterhond #perro #perrodeaguaespañol
10 december 2021 blev jag diagnostiserad av Heds, POTS och MCAS av Erik kindgren. Detta är någon timme innan jag fick dem officiellt. Detta tilt testet behöver avslutas efter 7 minuter av 15 för att jag inte skulle svimma… 🌹 .🦓. 🌹 #eds #heds #kroniskttrötthetssyndrom #chronicillness #chronic #zebra #mycondition #myedschallenge #edsforeningen #myhedschallenge
When you’ve totally stocked up on easy option meals, knowing you’ll be absolutely useless in a heatwave, and still just end up making your kids a chicken salad for dinner because they’ll probably want sandwiches straight after school. No watching toddlers deconstruct flatbread wraps today! #springishere #heatwave #edsawareness #chronicallyillmom #stillamom #gastroparesis #superiormesentericarterysyndrome #disabledbabe #momof6 #godismystrength #stillable #elhersdanlossyndrome #notenoughspoons #chronicpain #singlemomlife #invisibleillness #stillsick #motilitydisorder #bodyimageissues #tubie #advocate #disabilityrepresentation #disabilitycommunity #chronicillnesscommunity #effyourbeautystandards #zebrastrong #medicallycomplex #heds #familyof7
Day 9 of EDS & HSD Awareness Month and it’s #ThrowbackThursday. This photo is me on a family holiday, and I think it’s clear to see that my knees were just a little bit wonky, even as a 14 year old… At this point, I’d had a few issues with my ears, adenoids and tonsils as a very young child, needed my appendix removed, and pain in my right knee. However, I was told that the knee pain was all in my head and sent for a psychiatric assessment by my orthopaedic consultant (which came back that my mental health was fine and not the cause of my knee pain…!), and that unfortunately meant that many around me didn’t think I was genuinely in pain. I spent many months on crutches each year, and countless A&E visits after I would do my usual trip over nothing and trigger awful pain again. This continued and saw my left knee deteriorate over time, until at 27 I met a consultant who told my I had bilateral subluxing patella…! He also scored my 7/9 on the Beighton Scale though no further talk of that was had… I underwent Tibial Tuberosity Osteotomy on my left knee first, then the right 2 years later. An accident in September 2010 could have undone the healing for the left knee, but instead that was fine and I ended up needing spinal surgery for bulging discs, and then a fusion as the previous surgery was unsuccessful. It’s been downhill since then for my health, but it doesn’t stop me doing my best to remain independent and included in everyday life! 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 #EDSawarenessmonth2024 #EhlersDanlosSyndrome #hEDS #ChronicPain #ZebrasDazzle #ZebraStrong @ehlersdanlosuk @ehlers.danlos
Måste ge ett tips.. detta skriker min kropp efter nu! Jag kör denna vid varje vila och det är så skönt..känner att det pulserar behagligt i hela kroppen! #livetmedheds #heds #eds #hsd #bindvävssjukdom #bindvävsyndrom #edsawarenessmonth
#throwbackthursday to when I went to london with my mum and dad when i was 9. We walked around all day and although i was in a lot of pain, i enjoyed every second of it!! #fibromyalgia #chronicillnesswarrior #chronicpain #dealing #tryingmybest #heds #chronicillnessawareness #chronic #chronicallyill #chronicallyawesome #chronicallyiconic #iconic #awareness #eds #chronicwarrior #survivors #pots #cci #tmj #ibs #idiopathictoewalkers #recoveryisntlinear
We are a week late this year for EDS awareness month. Things have been difficult for the three of us recently, with the symptoms and comorbidities of EDS ravaging our lives. Although we won’t be doing a post a day this year, we have continued to research and make connections, so will hopefully be posting more regularly than we have been. Our aim is to raise awareness among health professionals directly, with information that is still absent from training in medical professions. We are exploring ways to communicate the often hidden impact of EDS/HSD on our lives, and summarise exciting new research. We are watching in real time as we move closer to understanding the underlying causes of hEDS, research that brings with it hope for new treatments. It has been amazing to see our posts continue to circulate, and continue to reach people struggling to make sense of the many life-altering symptoms and conditions associated with EDS. There are so many topics still to cover. We had some great responses to our request for post subjects and have added many to the list. Some requests were for topics already covered, so make sure to scroll down and check them all out. Thank you so much for all your support over the last year - it’s only been a year since we started Connective Issues, and we couldn't be prouder of what we have shared with you all. Stay tuned! Artwork by: @evelynruthart #EDSAwarenessMonth #EhlersDanlosSyndromeAwarenessMonth #HSDAwarenessMonth #EDSandHSDAwarenessMonth #EhlersDanlosAwarenessMonth #EhlersDanlosSyndrome #EDS #TogetherWeDazzle #EhlersDanlosAwareness #EhlersDanlos #ZebraStrong #MyEDSChallenge #MyHSDChallenge #HSD #HypermobilitySpectrumDisorder #Hypermobility #ChronicIllness #ConnectiveIssues #hEDS #cEDS #vEDs
Day 9 of EDS Awarness month #throwbackthursday In all these photos I had EDS even though I wasn't diagnosed until I was about 20 despite that I was diagnosed hypermobility amount other lists of symptoms for years explaining I would grow out of it however I never did in fact overtime things progressedlwsding to a diagnosis probably beacuse they could no longer say I would grow outof it once I passed my late teens Everyone of these photos I experienced some level or pain in would have falls or injuries allergies intolerances gastrointestinal problems sleep problems hypermobility injuries and so on but you couldn't tell just by looking at it for so long I hid hoe I felt due to medical gaslighting and believing I woulf growout of jt I just had to keep pushing through which in fact damaged alot of my joints as I wasn't allowing enough time for recovery This is why diagnosis matters we need to listen to our bodies 😊 #zebrastrong #wheelchairlife #adhd #edsawarenessmonth #edscommunity #chronicillness #chonicpain #chronicfatigue #disabledwomen #disabledlife #zebrawarrior #disabledandproud #eds #elhersdanlossyndrome #gastrointestinalproblems #hEDS #hearingloss #independence #edsawarness #edslife #neurodivergent #pheripheralneuropathy #edswarriorlife #autistic #edswarrior #tourettes #neurodiversity #ehlersdanlos #zebrastrong🦓
𝗗𝗮𝗴 𝟵 🦓 #ThrowbackThursday #tbt till när Barry visade tydligt att han vill vara nära när jag har ont. Han har egentligen visat tecken från början men det tog ett tag innan jag förstod. Vi adopterade Barry för att jag var ensam & i behov av stöd men jag visste inte hur bra det skulle bli. Han har sen start varit väldigt i synk med mina känslor & anpassat sig efter mitt mående. Har jag en dålig dag så har han hållit sig lugn & legat på soffan bredvid mig eller hämtat en leksak för att muntra upp min tillvaro. Han har inte haft några problem att spendera en hel dag på soffan när jag har för ont för att röra på mig men han bangar inte heller på en långpromenad & massor av bus de dagarna som jag mår bra. Underbara dunderklumpen! Tänk att någon dumpade dig på gatan, deras förlust, våran vinst 🩷 @ehlers.danlos @edsriksforbund @edshsdforeningen * * * * * * * * * * * * * * * * * * * * * * * * *________________________________________ #myedschallenge #ehlersdanlosawareness #ehlersdanlosawarenessmonth #togetherwedazzle #pain #chronicfatigue #raredisease #spoonie #disability #ehlersdanlossyndrome #chronicpain #EDS #zebrastrong #chroniclife #butyoudontlooksick #me #chronicillness #ehlersdanlos #chronicillnesswarrior #motivation #endthestigma #sjukdom #smärta #dysautonomia #hEDS #zebra #tbt #healthcare
Get your headphones on and fire up your gadgets! Add your favorite EDS fight songs to our growing EDS #CARE-E-OKE list on Spotify via the directions here: (Live links are up in our bio at https://linktr.ee/cppedsa ) https://www.chronicpainpartners.com/play-it-forward-care-e-oke-for-eds-awareness/ Then be sure to grab a matching #CareEOke t-shirt from our Bonfire fundraiser campaign by May 21st to go with that fighting spirit here: https://bit.ly/EDStshirt Proceeds go to support Chronic Pain Partners in our work to bring you the latest and greatest EDS and HSD news all year round! (Thank you so much!) #EhlersDanlosSyndrome #EDS #hEDS #Hypermobility #HSD #Karaoke #CareEOke #CPP #Spoonies #EDSAwarenessMonth #FightSongs #Booster #Fundraiser #NEISvoid #Zebras
The first house with the aquamarine door is my favorite one. 🩵 I guess there’s still a part of 19 year old me around, who wore nothing but aquamarine blue. I even used an aquamarine film on these. 🤷🏼♀️ Canon ae1 Aquamarine 35mm film Photos developed by @moodysfilm . . . . #palmsprings #palmspringsarchitecture #architecture #architecturephotography #photography #filmphotography #35mmfilmphotography #35mm #35mmfilm #canonae1 #aquamarinefilm #eds #heds #chronicillnessart #chronicallyillphotographer #chronicallyill #disabled #disabledartist #disabledphotographer #aquamarineblue [Image ID: Images 1-4- White homes in a midcentury modern architecture style in direct sunlight with palm trees and mountains behind them. One home per image. Image 5- A round rock that is center frame in a garden with cactuses around it. Image 6- A close up of a pink flower. Image 7- A close up of a cactus with yellow flowers. Image 8- A large tree that looks like a bonsai casting its shadow on the ground. Image 9- A different cactus close up with yellow flowers. Image 10- The same cactus shown further away. /End ID]
🦓 Maggio è il Mese della Consapevolezza delle Sindromi di Ehlers-Danlos (EDS), dei Disturbi dello Spettro dell'Ipermobilità Articolare (HSD) e delle condizioni correlate. Un'occasione per parlare di queste patologie complesse, spesso accompagnate al lipedema, e per esprimere solidarietà a chi ne è affetto. Le EDS sono disturbi genetici del tessuto connettivo che manifestano una grande varietà di sintomi, tra cui ipermobilità articolare e fragilità dei tessuti. Queste patololgie, così come il lipedema, richiedono una grande attenzione medica e spesso conducono i pazienti in un'odissea diagnostica estenuante. 🗣️ "Quando senti rumore di zoccoli, pensa ai cavalli, non alle zebre." Questo adagio medico enfatizza la tendenza a considerare le condizioni più comuni piuttosto che le malattie rare. Tuttavia, per chi vive con una "malattia zebra" come le EDS, la realtà è diversa. Essere una zebra significa affrontare diagnosi multiple, spesso errate, e sentirsi dire che "è tutto nella tua testa". In questo mese, vogliamo aumentare la consapevolezza sulle sfide che i pazienti EDS affrontano ogni giorno e sull'importanza del ruolo delle associazioni dei pazienti nel dare voce alle loro esigenze cliniche e assistenziali. 🔗 Per maggiori informazioni: AISED – Associazione Italiana Sindrome di Ehlers-Danlos Onlus: https://www.aised.it/ Associazione A.R.C.A.S.E.D.: https://www.facebook.com/sindromidiEhlersDanlos/ The Ehlers-Danlos Society: https://www.ehlers-danlos.com/ ⚠️ I link sono attivi nel nostro post Facebook! #EDSAwarenessMonth #EDS #hEDS #lipedema #lio #lipedemaitalia #BeightonScore #BrightonCriteria #collagene #Lipoedema #HSD #IpermobilitàArticolare #MeseDellaConsapevolezzaEDS #MalatiZebra #MalatiRari #MalatiInvisibili #MalattieRare #MalattieOrfa
Tekening 40 - Poppenkast Soms lijkt het wel één grote poppenkast. Zo zeg ik tegen iemand dat ik eigenlijk niet zo goed ga. Dat ik mij hartstikke moe en ziek voel. En niet veel later lijkt het alsof iemand op een knop heeft gedrukt en de poppenkastshow gaat beginnen. De adrenaline begint te stromen en daar ga ik weer. Al het ongemak en gedoe druk ik weg alsof er niets aan de hand is. Zo gaat het vaak in een gesprek of als ik de deur uit ga. Maar achter de gordijntjes ziet bijna niemand. Dan moet ik weer bijkomen en lig ik weer ziek op bed. Ik speel geen poppenkast maar het lijkt soms een poppenkast. Dat is hoe het gaat. Adrenaline is soms mijn grootste vriend en tegelijkertijd mijn vijand. Het is roofbouw en tegelijkertijd kan ik door de adrenaline een beetje leven. Maar ik merk wel dat ik steeds vaker een grote prijs moet betalen. En dat mijn poppenkast show meer moeite heeft met de uitvoering. #tekenreis #durftedelen #chronischcreatief #chronischziek #kunstvanhetziekzijn #hEDS #HSD #ME/CVS #OI #OH #Dysautonomie #POTS #Longcovid #b12deficient #arts #annemiekandrioli #kunst #theartistway #watercolor #poppenkast #roofbouw #leven
\\ May composition ♎ . . #chronicpain #mentalhealth #spinesurgery #eds #ehlersdanlos #heds #recovery #positive #butyoudontlooksick #scoliosis #waltoncentre #neurosurgery #pilates #appi #rehab #cyclingaccident #airambulance #physiotherapy #invisibleillness #notalldisabilitiesarevisible #breakthestigma #medicalcannabis #cbd #cbdoil #medicalcannabispatient #health
#spoonie #lupus #diabetes #endometriosis #metabolicsyndrome #ibs #mecfs #myastheniagravis #cysticfibrosis #epilepsy #mcas #multiplesclerosis #arthritis #heds #fnd #autoimmunedisease #fibromyalgia #moyamoya #chronicpain #chronicfatigue #POTS #potssyndrome #myalgicencephalomyelitis #functionalneurologicaldisorder #ehlersdanlos #longcovid #lymedisease #PCOS #crohns #immunesystem
Day 130. What EDS looks like. The joy of a largely invisible disability is that often no-one knows what you battle with... Which means that even people who know you often forget the dynamic nature of this syndrome. Don't assume that I can do something just because I could do it yesterday, or even this morning. Right now I'm tired. I'm in pain. I'm trying to do the things I need to do in preparation for the plumber tomorrow as well as dealing with family member illnesses... And trying not to push myself beyond my capabilities. Everything is a battle today but everything completed is a win to me. I will get things done, but there will be a price paid for the next few days. #day130 #photoeveryday2024 #dayinthelife #whatedslookslike #ehlersdanlossyndrome #heds #ehlersdanlosawareness #edsawarenessmonth #dysautonomiaawareness #posturalorthostatictachycardiasyndrome #gastroparesis #nomakeupnofilter #womenover50 #matureskin #badhairdontcare
"It may seem hard to believe if you are not chronically ill or you do not know anyone with a rare condition, but the reality is this: there are individual medical care providers, some of whom are excellent and caring, and there are systems, some of which sustain a healthcare network that functions well. On the flip side, there are individuals who are cruel and ignorant and there are systems that set up patients for failure. Of course, my focus in this essay is on the latter rather than on the former." From my latest blog post, "Medical PTSD and Chronic Illness: Root Causes and Strategies for Survival" (linked in bio). So many of my patients come to my clinic with medical PTSD on top of whatever initial condition left them in need of medical care. This blog post is for anyone and everyone who has been dismissed or belittled or gaslit or otherwise harmed at a medical appointment. It is especially (and written specifically for) chronic illness populations, especially EDS. I hope that it inspires and comforts. #MedicalPTSD #PTSD #ChronicIllness #ChronicPain #EhlersDanlosSyndromes #EDS #hEDS #HSD #EhlersDanlosAwarenessMonth #Zebra #Dazzle #MCAS #POTS #MCS #Dysautonomia #Spoonie #BetterBoundaries #Advocacy #Blogger #Author #Acupuncturist #TuinaPractitioner #HealthCoach #Herbalist #AustinTexas #ATX #ATXLife #TwoHeartsWellness #HolisticHealthAndhEDS
#hypermobilitysyndrome #hypermobilityspectrumdisorderawareness #hypermobility #hypermobilitypt #hypermobilityfitness #edsfitness #hypermobilityspectrumdisorder #ehlersdanlossyndrome #marfansyndrome #pots #chronicillnessawareness #connectivetissuedisorder #chronicillness #chronicpain #chronicpainwarrior #hypermobilityfitness #hypermobile #bendy #bendybutstrong #bendynotbroken #heds #physicaltherapy #physiotherapy #physiotherapy_world #chiropractic #rehab #hypermobilitycoach
Y’all, I did NOT want to self-infuse my prophy dose tonight when I got home. It was a LONG ASS day; emotionally, mentally and physically and I was just over it. But I saw my meds and my infusion kit sitting on the counter waiting for me. I’d already made a fuss at the eye dr when the nurse wanted to use MY VEIN for her IV for my FA (nah, uh, sis.) So I opened my meds and peeled the label off the bottle and stuck in it my log: 1 more step of commitment to the process that I REALLY didn’t want to do ( #autisticinertia is a real thing and it’s so redeeming to finally have words for it.) I carried my meds and my kit to the table and set out my supplies. 1 more step of commitment to the process. I mixed the meds. I was now committed to infuse within the next 3 hours or I’d be wasting THOUSANDS of dollars worth of medicine. FML. Fully committed now. I scrubbed up and hit the vein in 1 shot (thank goodness; this is already my 2nd poke today.) Why do I do this every week? Because otherwise (and honestly, even still, most days) I hurt. Despite my #tka (knee replacement) I still get microbleeds almost weekly due to being on my feet all day. But what happens if I sit and rest? I get stiff and sore due to my #heds. There’s no way to win with this broken ass body of mine. I’m lucky to get prophy as a woman with mild hemophilia. I’m thankful my team of doctors and physical therapists at the HTC don’t dismiss me. But still, most weeks I resist doing my prophy. I have to will myself to do it. Or have my kids keep me accountable. Others I end up waiting and putting it off and then the weekend comes and I’m nearly on crutches again. FML. For anyone in the same boat who may need a prophy accountability buddy, let’s connect and keep ourselves healthy. #hemophilia #ehlersdanlos #zebra #IntravenousFluoresceinAngiography #incontinentiapigmenti #ectodermaldysplasia #womenbleedtoo #asd #audhd #hemophiliaa #heds #targetjoint #arthritis #bendybitch #myassistired
𝐄𝐃𝐒 𝐌𝐞𝐦𝐞𝐬 Share your favourite memes with us! Tag us @ehlersdanlosaus 𝐄𝐡𝐥𝐞𝐫𝐬-𝐃𝐚𝐧𝐥𝐨𝐬 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚 Ehlers-Danlos Australia www.ehlersdanlosaus.com #memesfunny #hypermobilespectrumdisorder #memes #awarenessmonth #ehlersdanlossyndrome #eds #edsaus #heds #hypermobility #ehlersdanlossyndromeawareness #ehlersdanlosawareness #ehlersdanlosawarenessmonth #EDSAwarenessMonth
A few pics of bodybuilding days. Mixed emotions when I think back; I’m glad I did everything I did but I’m always sad about life having changed so much 💗🦓 #myedschallenge #EDs #hEDs #ehlersdanlosawarenessmonth #ehlersdanlossyndrome #ehlersdanlosawareness #chronicillnessawareness #notalldisabilitiesarevisible #butyoudontlooksick #memories #throwbackthursday #bodybuilding #invisibleillness #connectivetissuedisorder #ifyoucantconnecttheissuesthinkconnectivetissues #zebra #edsstrong #zebrastrong
Even after 50 milligrams of liquid Benadryl, the flushing on my face was still worsening. All I did was eat dinner. Something that should be routine for most people. For me, I have to take a litany of medication before I eat, and even then, I can still have an allergic reaction like I did tonight. I have to avoid certain foods, which is something I've gotten used to. The issue is when a food that my body has deemed safe ends up becoming the final trigger to a severe mast cell reaction. It's like playing Russian roulette anytime I eat. Often, I walk a fine line between taking my at-home medications to prevent a potential anaphylaxis episode from worsening while waiting for relief. Or not wasting time, using an Epi-Pen, and spending the next 12 hours in the ER without health insurance. Figuring out what to eat on a daily basis while trying not to end up in anaphylactic shock feels like a full-time job with zero benefits. Tonight, I ate dinner with my husband, felt my face become hot, ran to the bathroom, vomited more than humanly possible from the reaction, took the Benadryl, and watched the flushing on my face get worse while waiting for the medication to kick in. I am exhausted beyond belief from what my body is going through. After tonight's reaction, I'm out of safe foods beyond vanilla Muscle Milk protein shakes and salted in-shell sunflower seeds. I really, really hope I'll be able to find something else my body will tolerate for nutrition soon. *This photo was taken ten minutes after I took Benadryl tonight. It amazes me how red my face gets, especially when I see how normal my neck looks during a reaction. MCAS is a weird beast.* 〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️ #EDS #EhlersDanlos #hEDS #amputee #disabilityawareness #fightlikeazebra #mcas #dysautonomia #chronic #zebra #mentalhealth #surgery #disability #dislocation #amputation #limb #prosthetic #separation #mastcell #joint #fatigue #avascularnecrosis #replacement #wheelchair #instability #benadryl #medication #allergy #minnesota #health
Couldn’t wait for the new @drinklmnt goods to cool down - had to bust out the @javasok mason jar and ice! LMNT Sparkling Watermelon Salt is a winner in this zebra’s book! 🦓 #staysalty #heds #pots #edsawareness #edsawarenessmonth #mcas #gastroparesis #livingthezebralife #citrusandgrapefruitupnext
Day 8 "Matryoshka zebra" This is number 133 in our zebra looks. This was such a fun look to explore and I hope y'all enjoyed seeing it come together as much as I enjoyed painting it for you. A zebra within a zebra within yet another zebra. This was a special request from a very dear friend today. the matryoshka dolls or Russian nesting dolls are representative of generations giving birth to generations. which is so fitting as EDS zebras we often inherit this disease from mothers, grandmother and great grandmother's. There are the rare cases that aren't inherited, but with research they are learning more every day. However it's come into your life, you are beautiful in all your stripes. 🦓 #ehlersdanlosawareness #31daysofzebramakeup2024 #31daysofzebramakeup #zebrabodypaint #zebramakeup #zebramakeupchallenge2024 #mehron #mehron2024 #mehronaquacolor #mua #Twitch #twitchstreamer #twitchbodypainter #twitchvarietystreamer #eds #veds #heds #matryoshka #matryoshkadoll #russiannestingdoll
Augo being a cute little legend practicing settling in a busy cafeteria environment recently . #labsofinstagram #assistancedog #servicedog #sdit #servicedogintraining #assistancedogintraining #assistancedoguk #medicalalertdog #aduk #aduk #ptsddog #pots #heds #cptsd
DAY 7 OF EDS & HSD AWARENESS MONTH !! #treatmenttuesday ! Unfortunately I don’t have a ton of treatment photos so here are some pictures of a fully restocked med box lol I’ve got a mix of GI, heart, allergy and seizure medications throughout the day and I’m horrible at remembering to take them :,) but when I do remember they help tremendously! Shout out to @walgreens for this awesome and affordable med box btw ! I don’t like carrying the whole week with me but with this one I can just grab the day and go! Definitely an upgrade from my dollar store one but I have to admit I’ll miss the rainbow cases haha #treatment #treatmenttuesday #edsawareness #eds #mayawareness #hsd #hsdawareness #hsdawarenessmonth #edsawarenessmonth #edsawarenessmonth2024 #hsdawarenessmonth2024 #seizure #seizures #heds #orangeforedsandhsd
EDS and HSD Awareness Month. Day 8 - #Walk & Roll Wednesday. I enjoyed a beautifully warm and sunny afternoon walking with my dog around the neighbourhood. It’s been so cloudy and windy lately that it hasn’t been enjoyable to be outside, but today was a treat! 😁☀️@Ehlers.Danlos #ehlersdanlosawareness #heds #edsawarenessmonth
Day 8 EDSawarness walk and roll for me having my wheelchairs espciallythe off roading powerchair means I was able to get a dog and enjoy walks and the outdoors without pain and fatigue becoming unbearable mobility aids really can make a world of diffrence 😊 the had a parmchicken burger and home made chips for dinner 🍽 #zebrastrong #wheelchairlife #adhd #edsawarenessmonth #edscommunity #chronicillness #chonicpain #chronicfatigue #disabledwomen #disabledlife #zebrawarrior #disabledandproud #eds #elhersdanlossyndrome #gastrointestinalproblems #hEDS #hearingloss #independence #edsawarness #edslife #neurodivergent #pheripheralneuropathy #edswarriorlife #autistic #edswarrior #tourettes #neurodiversity #ehlersdanlos #zebrastrong🦓
Ehlers-Danlos Syndrome Awareness Month. Day 7 - #TreatmentTuesday: My favourite treatments are massage, physiotherapy and a relaxing float spa! I have a hot tub in my backyard, and it helps take the edge off my aching shoulders, feet, back, hips and neck, at least temporarily. The only treatment that I found for migraine prevention was Aimovig. I was giving myself an injection each month for a year at no cost and it worked very well! Then the company ended the trial and said they would be charging $1000 per injection!! That’s not going to prevent migraines!!😫😰 #heds @ehlers.danlos #edsawarenessmonth #ehlersdanlossyndromes #ehlersdanlossyndrome
Tonight was AWESOME! 💜 CEO of @hmsacharity Lisa Bone and I presented for @mastcellaction all things hypermobility. I talked a lot, I am now in full flop and recovery mode but it was 100% worth it 🥰 Looking at the live word cloud, we had some symptomatic hypermobility folk in the audience! We are everywhere 👀 Kim Clayden - The #FloatyTherapist ⚓️ . . . . . . . #MCAS #MastCellActivationSyndrome #Hypermobility #HypermobilitySyndrome #Symptomatic #hEDS #HSD #ehlersdanlos #EDS #ehlersdanlosawareness #ehlersdanlossyndrome
day eight for the @ehlers.danlos social media challenge during EDS/HSD awareness month: walk & roll wednesday. usually I’m walking, but sometimes you gotta roll with it. 📍magic kingdom, Walt Disney World • • • • • #disney #waltdisneyworld #wdw #disneyparks #disneylife #disneylifestyle #disneyaddict #disneyannualpassholder #wdwap #disneygram #instadisney #magickingdom #ehlersdanlossyndrome #heds #hypermobility #hypermobileehlersdanlossyndrome #chronicpain #chronicillness #chronicillnessawareness #chronicillnesswarrior #zebrastrong
EDS Awareness Challenge. Day 6 - #MedicalMonday: My advice for anyone recently diagnosed with hEDS or EDS is to start a medical binder and take it with you to appointments. Medical professionals may not want to give you time to open it, but I have often been able to answer questions by referring to letters and notes from specialists that I keep in chronological order, from most recent procedures back to the earliest. My diagnosis from the first geneticist who I saw is the first page in the binder, even though I had had many surgeries and medical appointments prior to meeting her! Luckily, I had a “diagnosis” of sorts made by my orthopaedic surgeon 20 years before that. The geneticist’s diagnosis was later confirmed with the more recent diagnostic criteria, and the changes to the 13 subtypes of EDS in 2017. I keep test results, etc. in page protectors, so they are easy to pop out of the binder to hand to doctors. #myEDSchallenge #medicalmonday #heds @ehlers.danlos
1 week post op from surgery #8. I can already feel a big difference in my core, feels like a full body exhale. First time that’s ever happened, it’s seeming like I’m turning a corner. It’s been a long hard ride, lots of unexpected layers to unravel, though some of those layers remain chronic, I’m finally responding to the treatments, my pain levels are more manageable. Feeling stronger, inspired and excited for what’s to come. * * * * #SelfPortrait #ChronicPain #UmbilicalHernia #Endometriosis #MastCellActivationDisorder #hEDS #FightLikeAGirl 💪🏼💛