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Information related to #RareDiseaseDay

Day 7 of the self proclaimed #backinthesaddle challenge. One more to go! Today I was exhausted, in pain and nauseated...but I did it. Dropping from 125mg of prednisone yesterday to 3mg today is painful, but it's how it goes with my ivig treatments. Always walk gently in the lives of others, as you never know the unseen battles beneath the skin. #invisibledisability #contemplative #independentwoman #invisiblenomore #iaminvisiblenomore #rareartist #rarediseaseday #horselover #horsesheal #chronicillness #teamdaf #stillirise #femininewisdom #feminineawakening #bodypositive #dysautonomiawarrior #thevulnerabilitychallenge #invisibleillnessawareness #adrenalinsufficiency #daretobereal #authenticliving #freedom #nedawareness #neda #lamberteatonmyasthenicsyndrome

37 0 Jul 21, 2018

Google Play da ücretsiz indir - #positivity #finebavariancrystal #miamifood #cooletruppe #seribukisah #rarediseaseday

2 0 Jul 21, 2018

Happy birthday to my little angel and my biggest blessing ❤️ #cutiesbabyever #secondbirthday #norriedisease #jeansforgenes #rarediseaseday

127 36 Jul 15, 2018

Ehlers-Danlos Syndrome is a connective tissue disorder that affects everything in the body that is connected to or works with connective tissue, such as joints, skin, arteries, blood vessels, etc. This photo was a part of my Senior Studio EDS Awareness Campaign. I wanted to feature someone with EDS showing ways in which EDS affects them. This is my sister, who has to wear this brace to straighten her spine or the only other option was surgery. Normally she wears the brace under her shirt but this campaign was meant to make the invisible, visible. . . . . . #zebrastrong #bnw_life #bnw_photooftheday #bnw_capture #bnw_captures #bnw_society #masters_in_bnw #blackandwhitephoto #master_in_bnw #blackandwhitephotooftheday #blackandwhiteonly #portrait #portrait_ig #eds #edsawareness #ehlersdanlosawareness #ehlersdanlossyndrome #rarediseaseday #raredisease #rarediseasewarrior #photographer #photoshoot #photolove #awarenessiskey #invisibleillness #invisibleillnesses #bnw_addiction #tuesday

81 7 Jul 17, 2018

This year for #RareDiseaseDay we launched a campaign using emojis to raise awareness of the #1in17 people who will be affected by a #raredisease at some point in their lives. What did you think of our campaign? #WorldEmojiDay

54 1 Jul 17, 2018

Another prednisone drop today. Down to 4mg. Each drop is a fight at this point...there's agitation, pain, nausea, anxiety and more...And there's a need to stay VERY quiet while my body finds balance (i don't want more ER visits due to crashes)...But I'm doing it, God willing. I will take any prayers for strength, comfort and healing as I drop again today. I've done many badass things in my life, but this slow drop off of prednisone, while engaging in massive IVIG antibody infusions, is among the most badass things I've ever done. And that's saying something! Healing is badass.

19 3 Jul 9, 2018

"It is so important to raise awareness on rare diseases and children affected by cancer. Donating blood can go towards helping those that are suffering from Leukaemia, for example. We think everyone should donate." -Sophia, Ella, Kristina

63 4 Jul 16, 2018

10 minute yoga session this morning. Just meh... It was good to do and I am glad I had the energy. I can only explain how I feel with this pic. Have been feeling bad for a while and though it is better than last week it continues. Lower back is very sore and I am nauseous a lot of the time. Good news is that I am walking with less of a limp now. . Keep your smile bright! . #syringomyeliawarrior #raredisease #syringomyelia #rarediseaseday #rarediseasesa #painmanagement #pain #yoga #yogawithadriene #exercise #chronicillness #chronicdisease #chronicpain #chronic #ill #makeadifference #warrior #community #southafrica #doctors #medicine #research #awareness #healing #backpain #showyourrare #showyoucare

31 1 Jul 21, 2018

Upper limb fasciotomy for compartment syndrome! This patient has developed a muscular compartment syndrome. This condition is most common after revascularization of an acutely ischemic limb, and is suspected in any patient who has an ischemic or traumatic injury to a muscle group that causes acute muscular edema. Compartment syndrome, which can be caused by an ischemia-reperfusion injury, occur after reperfusion of an ischemic muscle, resulting in edema of the muscle. Because many muscles are encased in an inelastic, fascial compartment, edema increases the volume, and ultimately the pressure, within the compartment. As the pressure builds up, muscle perfusion decreases, resulting in further ischemic injury, which worsens the edema. As the compartment pressure approaches 20-40 mm Hg, irreversible ischemic injury of muscles and nerves may occur, with motor or sensory loss or loss of the distal arterial pulses. In this case, a fasciotomy was performed to open the compartment of the forearm. Typically, the muscle bulges out at the point of excision, relieving the pressure and improving perfusion. Once the acute episode is resolved, the fasciotomy is closed with a split-thickness graft. The patient receives a physical therapy, is placed on chronic anticoagulation therapy with warfarin, and retains a functional limb.

26228 216 Jul 12, 2018

Ehlers-Danlos Syndrome is a connective tissue disorder that affects everything in the body that is connected to or works with connective tissue, such as joints, skin, arteries, blood vessels, etc. This photo was a part of my Senior Studio EDS Awareness Campaign. I wanted to feature someone with EDS showing ways in which EDS affects them. This is my sister, and I let her post however she wanted, so she decided to twirl. . . . . . #zebrastrong #bnw_life #bnw_photooftheday #bnw_capture #bnw_captures #bnw_society #masters_in_bnw #blackandwhitephoto #master_in_bnw #blackandwhitephotooftheday #blackandwhiteonly #portrait #portrait_ig #eds #edsawareness #ehlersdanlosawareness #ehlersdanlossyndrome #rarediseaseday #raredisease #rarediseasewarrior #photographer #photoshoot #photolove #awarenessiskey #invisibleillness #invisibleillnesses #bnw_addiction #tuesday #faceshots #twirling

51 7 Jul 18, 2018

#Repost crpsforum ( get_repost) ・・・ Who’s ready for a give away w/ oskawellness? 👋🏼 To enter the give away you must: 1.) follow oskawellness & crpsforum. 2.) repost this post on your Instagram page & tag oskawellness. You may post more than once. Winner will be chosen at random & announced on Saturday, July 21st, 2018, at 3 pm PST. We will contact the winner on Instagram direct messages to receive their mailing address. Oska Pulse is clinically proven to reduce inflammation, increase circulation, improve mobility and relieve pain. Oska Pulse is part of your pain management toolkit. Use it at home, on the go or in partnership with your doctor. Pulsed Electromagnetic Fields (PEMF) boost the body's ability to repair injured cells to relieve all types of pain. To learn more about oskawellness, please visit: https://www.oskawellness.com/ & make sure to follow them on social media! Good luck & thank you for participating! #crps #rsd #crpsawareness #crpswarrior #oskawellness #oskapulse #pemf #pemftherapy #chronicpain #chronicillness #rarediseaseday

7 0 Jul 21, 2018

A Esclerose Múltipla é uma doença neurológica crônica auto imune. Geralmente, compromete mulheres jovens caucasianas. A forma mais comum da doença ocorre em forma de períodos de surtos ( período de ativação da doença) e períodos de remissão. Sinais e sintomas como alteração de sensibilidade, equilíbrio alteração no campo visual, náuseas e vômitos podem ser sugestivos da doença, logo uma doença que pode ocorrer de várias formas, e apenas um exame neurológico adequado pode aventar essa hipótese diagnóstica. #neuro #exameneurologico #rarediseaseday #neurology #esclerosemultipla #multiplesclerosis

39 0 Jul 14, 2018

A post we had on our Facebook page from #rarediseaseday -What have you learned through your condition? For some they have learned to be kinder to themselves, while others learned who in their lives are really there for them when times get tough. It’s important to stop and take stock of what we have sometimes. What do you think has been the biggest lesson this life with EDS/ HSD has taught you? • • • #eds4ire #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #edsireland #irishedsandhsd #chronicillness #chronicillnesswarrior #spoonie #disabilitypride #rarediseaseire #raredisease #rarelydiagnosed #rarediseaseday2018 #zebra #zebrastrong #EDS

17 2 Jul 21, 2018

Ehlers-Danlos Syndrome is a connective tissue disorder that affects everything in the body that is connected to or works with connective tissue, such as joints, skin, arteries, blood vessels, etc. This photo was a part of my Senior Studio EDS Awareness Campaign. I wanted to feature someone with EDS showing ways in which EDS affects them. This is my sister, and this photo was used for a lenticular poster to show how EDS is considered an invisible illness. . . . . . . #zebrastrong #bnw_life #bnw_photooftheday #bnw_capture #bnw_captures #bnw_society #masters_in_bnw #blackandwhitephoto #master_in_bnw #blackandwhitephotooftheday #blackandwhiteonly #portrait #portrait_ig #eds #edsawareness #ehlersdanlosawareness #ehlersdanlossyndrome #rarediseaseday #raredisease #rarediseasewarrior #photographer #photoshoot #photolove #awarenessiskey #invisibleillness #invisibleillnesses #bnw_addiction #tuesday #faceshots

52 0 Jul 18, 2018
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