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#shareyourrare

Posts tagged as #shareyourrare on Instagram

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March 26 #purpleday2019 Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with #epilepsy.  Cassidy's goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone.  Find out more @purpledaymarch26 . • • My daughter was diagnosed with epilepsy when she was 17 months old.  Since then, she has developed atleast 5 different types of seizures of which she has had over 100,000.  Her seizures present themselves as #lennoxgastautsyndrome from a cause that is unknown.  I was told there was a good chance she would not live to be a teenager, she is turning 16 on April 5th!  Always keep the faith, never give up hope, celebrate each day and never take a seizure-free day for granted. • • • • At @Hannahtopia_llc, our mission is to provide alittle happy to a child that is living with medical challenges. #happinessishealthy and helps with the healing process. • • • • #lgs #dravetsyndrome #dravet #scn8a #angelmansyndrome #myoclonicencephalopathy #juvenilemyoclonicepilepsy #juvenileabsenceepilepsy #emerolandic #tbckrelatedidsyndrome #angelmansyndrome #ringchromosome20syndrome #doosesyndrome #infantilespasms #cdkl5 #frontallobeepilepsy #landaukleffnersyndrome #neurocutaneoussyndromes #panayiotopoulossyndrome #rasmussenssyndrome #reflexepilepsies #sunflowersyndrome #temporallobeepilepsy #shophannahtopiafightepilepsy #epilepsyeducation #shareyourrare #reallifesuperheroes
My face when a doctor thinks that just because I'm not in a wheelchair, then I must automatically be completely healed and able to go back to school and work a job and be a normal human again all at once... 😒 . . I'm not in a wheelchair right now and I am incredibly grateful for that. However, that does not mean that everything is perfect and I'm completely healed. I still have my fair share of problems, and just because I'm not in a wheelchair doesn't mean that they don't exist. It's hard when a medical professional can't see that or simply refuses to. This doctor in particular literally asked me if I wasn't in school because I was scared of it or hated it...sigh... If only she knew how many times I've sobbed and felt like a failure because I can't physically be at a university right now. I am NOT using excuses to keep me from opportunities in life! I have physical conditions that literally stop those things from being an option. Big difference. . . . I could go on and on lol. But I won't. Because someone else's ignorant opinion of my life and decisions does not define me. My life is SO different than I had planned. And guess what? That doesn't make it any less valuable or mean that I'm not working hard enough. Different does not equal less than. It's taken me years to know that. I'm proud that I can own it, no matter how many people think otherwise 💪 . . . . . #shareyourrare #sharegoodness #justkeepswimming #journal #diary #proudofmyself #chronicillnessawareness #awareness #wonderwoman #strongwomen #conversiondisorder #fibromyalgia #warrior #thoughts #invisibleillness #fnd #functionalneurologicaldisorder #blessed #dontjudge #ownit
We want to help you bring awareness for yourself or loved one. Click the link in our bio for a chance to be featured on our page.  #rareis #mymason #raredisease #careforrare #shareyourrare
Pulmonary appointment at @archildrens bright and early with this crazy crew!!! #archildrenshospital #warriormama #shareyourrare #waylonswarrior #babyduck #specialneedsmom
I’ve been quiet and not sharing a lot and had a lot on my mind and it’s very much out of character, especially given what the situation has been and the challenges forthcoming.  As many of you know, I took SEVERAL trips to the emergency room the last few weeks for a massive infection. During this time, a lot of blood was taken for tests. I went in to see the doctor who manages my EDS care prior to the third ER visit (he made me go), when he decided to take a look at things to decide what care I needed before calling the ER to advise them given my fragile state.  That’s when everything changed. He noticed a particular blood test flagged in each of my visits to the ER as being below acceptable levels. This enzyme is necessary for mineralization of bones and can lead to major, major health issues—including the curving of large bones, adult onset scoliosis, major dental issues, respiratory issues, and an immune system extremely susceptible to infection. It also causes extremely loose joints susceptible to dislocation and extreme chronic pain not responsive to traditional treatments, but there is treatment available.  This condition is progressive and would likely cause my bones to continue to deteriorate and fracture over time due to their composition without intervention. SO, he looked back at 6 years worth of lab work—and every single time my blood was run, I fell below the acceptable range.  This rare genetic condition, Hypophosphatasia, exists in 1 in 100,000 people and because doctors are trained to look for HIGH numbers on this blood test (indicative of kidney failure), it is almost always missed.  Thankfully, my doctor cares tremendously and consulted genetics immediately who agrees I have a metabolic bone disorder of some kind. We are HOPING it is this one, because currently genetic testing is available completely FREE and by mail, so results of the test would be available in under a month, while results for other metabolic bone conditions could take
Smiling 'cause I've been feeling SO much better for the last few days! I LOVE feeling so good, it's the absolute best 💪 . . . . . . . . . . . . . . #shareyourrare #sharegoodness #justkeepswimming #journal #diary #proudofmyself #chronicillnessawareness #awareness #wonderwoman #strongwomen #conversiondisorder #fibromyalgia #warrior #thoughts #invisibleillness #fnd #functionalneurologicaldisorder #blessed
This kid 😍 #tubielife #curecmd #shareyourrare #specialneedschild #warriormama
I was diagnosed with Guillain-Barre syndrome, when Casey was just 3 weeks old. I went to the hospital with what I thought was a pinched nerve, and did not come home for 5 months. I spent 3 months paralyzed in ICU, before l learned how to breathe on my own again, how to hold cutlery, how to eat, drink, talk, shower, and then walk again. Who knew that while I was going through the most terrifying time of my life, that it would end up being the best thing to happen to me. discovered my strength, I discovered my worth and I discovered that I could do anything if I put my mind to it. The things I've accomplished since having GBS, from learning to walk, then run, from writing a book to climbing a mountain, speaking at Universities, volunteering with the GBS foundation and helping others through this disease, and becoming stronger in the gym than ever before- these are things that I would have never accomplished, had I not had GBS. And for that, I will forever look back on this day with gratitude and appreciation for the woman that it made me. #absanniversary #withpaincomesstrength #feb22 #shareyourrare #guillainbarre #gbs #autoimmunedisease #strength #determination #icu #coma
Loved catching up with my favourite little dude Torben  #nephew #family #torben #torbearsitall #babiesofinstagram #saturday #blackandwhite #aadc #aadctrust #raredisease #shareyourrare
My way baby finally said mama!!! Go baby go!!! #waylonswarrior #babyduck #curecmd #shareyourrare #specialneedsmom #momvlogger
Diagnosis || Patients with Noonan syndrome often have short stature, distinctive facial features, a congenital heart defect, structural changes of their genital and/or urinary systems, changes in the shape of their chest, and variable degrees of developmental delay, among other features. This diagnosis is established with a multigene panel, since pathogenic variants in several genes (most commonly PTPN11) can lead to this syndrome.  Noonan syndrome affects between 1 in 1000 to 1 in 2500 people worldwide. Follow @rasopathiesnet & check out rasopathiesnet.org to learn more.
This sweet girl, Aurora, was born with Hirschsprung’s disease. After multiple surgeries and help from her doctors, she is thriving with the support of her family!  #rareis #shareyourrare #careforrare #raredisease #hirschsprungsdisease
Ogni 6 mesi #profumeriesbraccia sceglie una #mission. Dopo l’ #autismo con #philos, la ricerca per le malattie rare @lazebrahrosa #shareyourrare. . . Il 28 febbraio si è celebrata la giornata delle malattie rare. . #sbracciasocialresponsibility #socialresponsibility #genova
We hope all of Will's Warriors are having a wonderful HOPE-filled Spring Break! Nothing can stop our Will living on the power of HOPE! #savewill
I haven't been doing very well over the last few days...don't know why, but my body gave out and I've spent most of the time in bed. I really hate it when stuff like this happens, it's so frustrating :( Hoping for a better week this week! . . . . . . . . . . . . . #shareyourrare #sharegoodness #justkeepswimming #journal #diary #tired #proudofmyself #chronicillnessawareness #awareness #wonderwoman #strongwomen #conversiondisorder #fibromyalgia #warrior #thoughts #invisibleillness #fnd #functionalneurologicaldisorder
Happy 14th Birthday to Will’s biggest “little” brother and best friend Steele! Steele takes “my brother’s keeper” to a whole new level, as his protector, prayer warrior, and advocate. Today we celebrate Steele’s special day and look back on his powerful remarks from this past year's HOPE Under the Stars! Link in bio.  #savewill
Happy Rare Disease Day 2019! It is fitting that today I spent a few hours at the doctor and in the lab here at GW medical center, not because I’m actively sick (as in having the flu) but because having regular exams and check ups every few weeks to manage symptoms and adjust meds is just a part of my life. Rare should be my nickname, lol.  #shareyourrare #dystonia #waardenburgsyndrome #dysautonomia #eds
Nathan Day-Hifko crushing miles in 2019 #nobreaks #shareyourrare #pitthopkinssyndrome pitthopkins.org
Pictured here, is the family photo we took to document us finding out that we were pregnant with our second child, who we now know as Brooks. We were all in. We were so excited for baby number two and excited for Brice to have a sibling. We embraced the excitement and vulnerability that came with this test result and in hindsight it makes this picture even more important.  We (Caitlin and Rich) went about starting a family like most couples. We both had primary care doctors and had an idea about our family history. Caitlin had two healthy siblings and Rich had four healthy siblings. Caitlin’s maternal grandparents had 12 children and her paternal grandparents had seven children, all were healthy. Rich’s maternal grandparents had seven children and his paternal grandparents had four — all were healthy. Clearly, there was no concern in the fertility department and nothing suggesting that we could both be carriers of anything, let alone a lethal inherited rare condition that could be passed on and affect any of our children. Taking additional precautionary steps other than talking to our primary care physicians, like a genetic carrier screening, was not something we were worried about. We are now aware of the misconceptions we had and understand more about the practice guidelines and limitations that organizations have in relation to genetic screening. #rarediseases
Genetic Counselor || “While the role is constantly expanding, genetic counselors most often work with individuals and families who have, or are at risk of having, a genetic condition. Genetic counselors aid in the genetic testing process and help individuals understand and adapt to the many implications that can accompany a genetic diagnosis.”⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ …⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ “Genetic counselors are members of the healthcare team that help families navigate genetic testing and provide support through the impact of a genetic diagnosis.”⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ 🦓⠀⠀⠀⠀⠀⠀⠀⠀⠀ We are so grateful for these contributions from genetic counselors @heyitsabba & @electricbells
Yesterday and today have been messy and hard on so many levels. I've cried a lot, I'm so worn out and confused and exhausted. I guess I'm just tired of carrying so much all at once, it's really wearing me out. I found this picture today and it reminded me to be proud of my efforts for the last few days, even though they've produced different results than I was looking for. I've done my best with what I have, and that's what matters :) . . . . . . . #shareyourrare #sharegoodness #justkeepswimming #journal #diary #tired #proudofmyself #chronicillnessawareness #awareness #wonderwoman #strongwomen #conversiondisorder #fibromyalgia #warrior #thoughts
no filter needed for this cheeky little cherub such a water baby loves his baths ...good job cause he has ALOT of them  lol 😂💙 #shareyourrare #hirschsprungsdisease #hdwarrior #mumlife #myboy
💛💙💜💚❤ #repost @robertdowneyjr • • • • • • Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness -------------------------------
When you #shareyourrare people take notice! The #fdmas community has always known that @LaurenRuotolo is #unstoppable, thanks to @ariannahuff for seeing this #raregem too!
#repost @robertdowneyjr  A real superhero stands up for those who are vulnerable and suffering. Well-known celebrity and Iron Man @robertdowneyjr teamed up with Aaron Hunter to help raise awareness for the children who suffer from the extremely rare, life threatening and life limiting disease ROHHAD.  Together they hope to raise funds to help researchers in America, Canada, Italy and the UK , understand the disease, improve treatments and hopefully one day find a cure.  Watch the video - shared on our Facebook page.  Thank you #teamdowney for #showingyourrare 💙  Credits: @mo_freek and @jimmy_rich from #teamdowney
One of the highlights of last year was meeting this incredible woman! @megjohnsonspeaks was so kind, positive, and encouraging. I'll never forget the love I felt from her and how it touched my heart. It was an experience that changed my life ❤ . . . . . . . . . . . . #spoonie #spoonielife #warrior #wonderwoman #strongwomen #conversiondisorder #conversiondisorderawareness #fibromyalgia #shareyourrare #chronicillnessawareness #awareness #strong #chronicpain #sharegoodness #womenshistorymonth #sunday #inspire #inspiration #motivation #wheelchairlife
Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness @robertdowneyjr @doubleuayne  #🃏comicsweaties©📙
Thank you so muxh for sharing your beautiful boy and Bridget the Wonder Dog. ❤❤❤❤ #seuzures #dravetstndrome #dazzle4rare . . Reposted from @bridget_the_wonder_dog -  Mom is a few days late in sharing this, but this was our #shareyourrare post for #rarediseaseday2019 💜 #repostplus @4pawsforability - - - - - - Seizure alert service dog Bridget (Widget) helps her boy Shayne, who is diagnosed with a rare genetic epilepsy called Dravet Syndrome.  She attends school with him daily where she pre-alerts to his frequent seizures.  She is also trained in behavior disruption, since he also has sensory processing disorder and Autism.  Before she entered our lives he had issues falling asleep every night for years- since she came home that has completely resolved.  We can’t imagine our lives without her- she’s a constant companion and a best friend to our rare warrior. 💜 www.4pawsforability.org #rarediseaseday #4pawsforability #showyourstripes #showyourrare - #regrann
“It is Rare Disease Day, so I figure I should say something about my rare disease. I have Chronic Intestinal Pseudo-obstruction (CIP/CIPO) secondary to autonomic/visceral neuropathy. Unlike some who's Rare Diseases are caused by faulty genes, my CIPO is caused by chemotherapy and radiotherapy I received for cancer in my pelvis/spine as a toddler. My life is filled with hospital stays, severe distension that often requires draining of my stomach and intestines to avoid organ rupture, medications that cause their own slew of issues, and daily 16 hour long infusions to stay alive. #shareyourrare About 9 in 1,000,000 people are affected by CIPO.” – @chronically.julia
This is our amazing 7 year old son, Brice. Two months before Brooks was born, Brice had turned 2. Brooks was fascinated with his older brother’s whereabouts and his head would follow Brice’s voice all around the room... if you could hear Brice then Brooks was looking for him.
We want to introduce you to Blue Bunny. In the hospital Blue Bunny was Brooks’ adorable little stuffy but we also used him to help keep IV lines, cords and tubes separated and untangled while treating Brooks. Blue Bunny has gone everywhere with us ever since — he’s even been scooped up in the hotel sheets with all the traveling we do! Thankfully he was retrieved 😃
I am very impressed and inspired by this young lady. Mikela St. John, a senior at Valley Christian, lives with VACTERL a rare disease. She, along with her Girl Scout troop,  decided to bring awareness for rare diseases to San Jose. She did a remarkable job putting this event on. #sjrarediseases #cured #shareyourrare #rarediseaseday2019
Representing CURED at San Jose’s First Annual Walk for Rare Diseases. 💜#CURED #rarediseaseday2019 #shareyourrare #sjrarediseases #theapothecarymh #cannabis #cannabiseducation #medicalmarijuana #marijuana #cityofmorganhill
Representing CURED at San Jose’s First Annual Walk for Rare Diseases. 💜#CURED #rarediseaseday2019 #shareyourrare #sjrarediseases
Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
🦓❤️💪🏻Repost from @thetravelinghaloofhope using @RepostRegramApp - As #rarediseaseday comes to an end, I'm so happy to share w/ you the zebra I've been working on this week. It's not 100% done but that's 👌. Compared to the brutal pain I was in 4 months ago, a ton of progress has been made. Drawing in & of itself is an accomplishment. EDS has taken so much from me & I don't want it to take drawing away too. This is the 1st drawing I've pretty much done since 2016 & it was nixe to get back at it. My parents said it's nice aeeing me draw again. I chose to draw a zebra in honor of rare diaease day bc there's a phrase in med school, 'When you hear hoofbeats,think of horses not zebras". This means to think of more common medical problems vs. the more rare ones. The zebra is also the mascot for EDS. Today is a day where thousands & thousands of people come together to raise awareness. Awareness ➡️education➡️knowledge➡️ research➡️ 🤞a cure/better treatment options. I deal w/ various medical issues every single day. I was thrilled to write an article for Love What Matters. I briefly summarize the past 13 years of my life w/ pictures, enduring 35 surgeries, dealing w/ the mental aspect & trying to raise awareness for EDS. Go to 'My Story' & swipe up to read OR click the link in my bio. Since it is Rare Disease Day, I would ❤ if you would share on Facebook, Twitter, however you want to. The more EDS awareness the better. You never know if one share can change someone's life. It's over 8,500 FB shares. Let's see if it can be at 9,000 come morning. . . . @ehlers.danlos @ehlersdanlosuk @rarediseasedayus @healthbeme . #shareyourrare #dazzletogether #ehlersdanlos #ehlersdanlossyndrome #invisibleillness #invisibledisabilities #chronicpain #chronicillness #hypermobility #smilethroughthepain #butyoudontlooksick #spoonielife #spoonie #zebrastrong #zebra  #spinalfusion #scarsarebeautiful #scoliosis #themoreyouknow #artist #drawing
Yesterday was #rarediseaseday which I missed bc of a #migraine courtesy of one of my #rarediseases 🤦-- but in case you're wondering just how rare I am, let us count the ways... 1) I am the 4th generation in my family with an HLAB27 gene disease (#CrohnsDisease).. 2) Born with IGA Primary Immune Deficiency (but wasn't diagnosed until 15).. 3) Experienced medically induced coma.. 4) #complexregionalpainsyndrome diagnosed at age 12.. 5) Diagnosed with Postural Orthostatic Tachycardia Sydrome in 1997 (before it was even named #pots).. 6) Diagnosed with Degenerative Disc Disease at age 20 (!).. 7) Experienced tetany (twice!) during acute kidney failure.. 8) My bowel and ostomy shut down and were completely nonfunctional for over 15 months 2005-2006.. 9) Had, survived, and am a carrier for MRSA.. 10) Experienced Septic Arthritis* in 2 joints* that resolved without surgery* as a side effect* of a staph infection (*= rare).. 11) Diagnosed with osteoporosis before age 30.. 12) #shortgutsyndrome since 2012 surgery.. 13) Developed Secondary Hemochromatosis (an iron overload that the body can't dispose of), with iron building up dangerously in my spleen, liver and bone marrow.. 14) I acquired (was not born with) a #chiarimalformation (when the bottom of your brain extends into the spinal canal).. 15) After 20 dormant years my Epstein Barr Virus reactivated in 2015.. 16) Diagnosed with #superiormesentericarterysyndrome in 2016, a disease that effects only 0.03- 0.13% of the population.. 17) Technically I can't claim # 17 bc I haven't been diagnosed yet, but let's just call it a placeholder for another specific #rareillness diagnosis that seems heading my way... . #shareyourrare #rarediseaseday2019 #rainbowzebra #chronicillness #chronicillnesslife #spoonie #spoonielife
Happy National Rare Disease Day everyone! Well... day after national rare disease day because my video took all day to upload. 😂 . .  Click the link in my bio to see my Ehlers Danlos Syndrome Q and A on YouTube (my first ever video!). I'd love to hear feedback or any other video suggestions from you! The audio and video seem a tad out of sync after uploading, and I’m not sure why. If anyone knows how to fix this, I’d love to know! ☺️ . .  #flawrarediseaseday  #rarediseaseday #rarediseaseweek #rarediseaseawareness #icareaboutrare #raredisease #shareyourrare #showyourrare #eds #ehlersdanlos #ehlersdanlossyndrome #heds #hypermobileehlersdanlossyndrome #ehlersdanlossyndromeawareness #raredisease #zebrastrong #hypermobilitysyndrome #hypermobility #hypermobile #chronicillnessblogger #spoonieblogger #thespooniesisterhood #sustainablespoonie #firstyoutubevideo  #newchannel  #invisibleillness #chronicillness #spoonie #spoonielife #butyoudontlooksick
A special thank you and recognition to our beloved team member Sarah Ziegler for all of her tireless advocacy on behalf of all children and adults living with #rarediseases!  Dr. Feldman and Sarah presenting at the Rare Disease Day symposium @sanfordburnham.  #rarediseaseday2019 #shareyourrare #paleycare
Even the seemingly "small" things like taking a shower can knock me flat.... Proud of myself for pulling through anyway 💪 . . . . . . . . . #spoonie #spoonielife #friday #itsthelittlethings #warrior #wonderwoman #strongwomen #conversiondisorder #conversiondisorderawareness #fibromyalgia #shareyourrare #chronicillnessawareness #awareness #strong #chronicpain #proudofmyself #littlebigvictories
(In Closing :Part 4)  Please and Thank you for your considerate giving, for all the Zebras out there .... You can copy link to donate below  Hope 🖤 Heal 🖤Cure 🖤 #henrymatisse #shareyourrare  #hopeitsinmygenes #wrdd2019 #worldrarediseaseday #careaboutrare  #rarediseaseday2019 #globalgenes #beyondmybattle #spooniesupport #chronicwarrior myrares : 🦓#dercumsdisease  #adiposisdolorasa 🦓#eds 🦓#mcas 🦓#crps #mixedconnectivetissuedisease 🦓#chiarimalformation #hsd 🦓+ 10 other co-morbidities/diseases  To Donate for a cure to the TREAT research for program copy link below ( and follow steps 1-4 )  https://www.uafoundation.org/NetCommunity/Page.aspx?pid=364  1 Choose College of Medicine  2 Enter the amount you wish to give.  3 Go to the designation dropdown and click on “Other.” 4 Write in the name of the fund:  TREAT 20-10-2503 Click “Add Donation”  To Donate to grant funding for research for all rare disease applicants :  https://globalgenes.org/donate-now/
(Part 3)We don’t respond to normal cancer type pain treatments for sustained periods,  nor any regular pain treatments . There has been overdoses to death to try and relieve our pain . We live in a chronic pain that is not measurable on a standard pain chart . We war daily with other horrendous co-morbidities , diseases and symptoms . The symptoms and pain on google don’t even touch our complexity of symptoms and pain. All of us Rare Zebras across the world have incredibly difficult prognosis and daily battles . My Rare Disease Doctor gives me things I can do and methods to try to help manage , i’m a yes girl , I’ll try it !! Some things are incredibly helpful for a period of time and others don’t touch it . Yet in the full picture it never takes away the ever growing toxic shrapnel inside me  or relieves me to a pain lower than an elephant trying to kill me . She gives me priceless incredible compassionate care, which outweighs my pain when I see her and she’s always giving me hope and joy and encouragement . Most other doctors I see have to google my disease , ask me how to pronounce it , have me explain it ,then tune out.  Its only through my amazing Doctor , my beyond loving,  compassionate,  supportive,  caring,  giving , hardworking husband , and my Faith in Christ , that continually me  up and sustains me.  My God , He is with me in all my darkness , in all my pain , His grace is sufficient and He is my strength made perfect in my weakness - In Whom I trust and He endureth with me ... my health may fail and my spirit may grow weak , but God remains the strength of my Heart and His Spirit my ever lasting light and my . #shareyourrare  #hopeitsinmygenes #wrdd2019 #worldrarediseaseday #careaboutrare  #rarediseaseday2019 #globalgenes  #beyondherbattle #spooniesupport Our Rares: 🦓#dercumsdisease  #adiposisdolorasa 🦓#eds 🦓#mcas 🦓#crps  #mixedconnectivetissuedisease 🦓#chiarimalformation #hsd 🦓+ 10 other co-morbities & diseases
*NEW BLOG POST* “Mast Cell 101” It should come as no shock that Adelaide’s body likes to keep us on our toes. Just over a year ago we added a new rare disease to Adelaide’s growing list of diagnosis: Mast Cell Activation Syndrome. Who’s ready for mast cell 101?! Don’t worry I explain it all in typical Kelly fashion: a little bit of science with a lot bit of sass. Link in bio! #mcas #mastcellactivationsyndrome #rarediseaseday #shareyourrare #zebrasnothorses
he's got that Friday feeling smashing everything hirschsprungs disease throws at him weighs 17lb 12oz at 9 & half months old amazing ..he can crawl,pull himself up ..sit up alone ..so full of life..no holding my gorgeous prince back #hirschsprungsdisease #hdwarrior #shareyourrare #myboy #myhero
(Intermission Battle) Every chronic warrior was gongfu fighting Those rare diseases were fast and grinding  In fact it was quite quite frightening But they fought and kicked back like thunder and lightning  They were Sunset Kimono girls from Turquoise Tosa Town  They were chopping Dercums up and they were chopping EDS down It's an ancient Asian art and everybody knows their part From a Ce Chuai Tui into a slip,  A dislocated crouching tiger crane,  A shaped rock to chuck high from the hip  Sunset Kimono are chronic warrior  fighting Sunset Kimonos are expert in horizontal timing  Skills and wisdom tightning  Kick flying through the Taklamakan Sonora shining  There was cheeky HoneyJules and little Emerald Sky Wearing black Sunset Kimonos for the ones that died  Emerald said here comes the Master,  Docta K , we need to win today  We all took a bow and made a stand  We and the Sunsets started swinging at the Diseases with the Golden Doctors hand  The sudden comotion got me burning aww ba ba xie xie Nope. But now we're into this war for our brand knew Hope  Everybody was gongfu warrior fighting These Chronic Chicks are Expert Sunset Kimono Chronic fighting ... 🖤🖤🖤🖤🖤___________________________________________ song lyrics revitalized by Honey & Dirt  #hopehealcure  #shareyourrare  #hopeitsinmygenes #wrdd2019 #worldrarediseaseday #careaboutrare  #rarediseaseday2019 #globalgenes #beyondmybattle #spooniesupport #chronicwarrior myrares : 🦓#dercumsdisease 🦓#adiposisdolorasa 🦓#eds 🦓#mcas 🦓#cprs/rsd 🦓#Mixedconnectivetissuedisease 🦓#chiarimalformation 🦓#hsd 🦓+ 10 other co morbities  To Donate for a cure to the TREAT research click on link below ( and follow steps 1-4 :  https://www.uafoundation.org/NetCommunity/Page.aspx?pid=364 	1	Choose College of Medicine 	2	Enter the amount you wish to give. 	3	Go to the designation dropdown and click on “Other.” 4	Write in the name of the fund:  TREAT 20-10-2503 Click “Add Donation”
(Intermission ) 🖤 This is my beautiful loving co warrior support friend @emerald_sky whom also shares in over half of the diseases I have . We war together 🦓🧡🦓. We met online across states thru connecting through our same Rare Dr. Karen Louise Herbst Our symptoms & pain on google don’t even touch them all of our of agony, co-morbidities and complexities.  All of Us Rare Zebras across the world have incredibly difficult prognosis and daily exhaustive battles.  Hope , Cures , Compassionate awareness , research , support and care is what we need , Hope outweighs pain.  Please and Thank you for your considerate giving, for all the Zebras our there .... You can copy link to donate below.  Hope 🖤 Heal 🖤Cure 🖤 #shareyourrare  #hopeitsinmygenes #wrdd2019 #worldrarediseaseday #careaboutrare  #rarediseaseday2019 #globalgenes #beyondmybattle #spooniesupport #chronicwarrior myrares : 🦓#dercumsdisease #adiposisdolorasa 🦓#eds 🦓#mcas 🦓#crps #mixedconnectivetissuedisease 🦓#chiarimalformation 🦓#hsd 🦓+ 10 other co-morbities  To Donate for a cure to the TREAT research for mine and Emerald Angela’s Rare disease copy link below ( and follow steps 1-4)  https://www.uafoundation.org/NetCommunity/Page.aspx?pid=364  1 Choose College of Medicine  2 Enter the amount you wish to give.  3 Go to the designation dropdown and click on “Other.” 4 Write in the name of the fund:  TREAT 20-10-2503 Click “Add Donation”  To Donate to grant funding for research for all rare disease applicants :  https://globalgenes.org/donate-now/
Tried getting my little guy singing.💖😂 Yesterday was a good day...♡ The kind of day that makes trudging through the awful days 💯% worth it. Part of caring for yourself, is making sure you surround yourself with people who love as deeply as you do. It was lonely choosing to not keep friends who weren't true friends around for a bit there... It's amazing what comes into your life, when you only permit what is good for you, and NEVER permit the toxic.♡ Stopped to grab a "91 sister" hybrid preroll from @zenleafvegas on the way home, because I didn't quite need the heaviness of what I had at home.  @lovelytheband  @mac
Chronic illness is often unpredictable, whether rare or not. I have not had a chance to do a proper world rare disease day post yet today so I will be having a redo tomorrow when I have the spoons and mental capacity to think clearer to gather my thoughts and be able to close caption my videos.  Image description in the background are zebra stripes in various shades of glitter starting at the top with turquoise then purple then pink then orange then yellow and then green. At the top is a white rectangle with the world rare disease Day banner on it, the logo (located on the far left) is made out of 3 overlapping hands in green pink and blue, where the hands meet the color turns purple. The words Rare Disease Day™ is in pink in capital letters. Below the banner is a picture of an old-fashioned sign that says "out of order" in white block text over a black background in an old frame.  #shareyourrare #showyourstripes #worldrarediseaseday2019 #worldrarediseaseday
Yesterday was a good day...♡ The kind of day that makes trudging through the awful days 💯% worth it. Part of caring for yourself, is making sure you surround yourself with people who love as deeply as you do. It was lonely choosing to not keep friends who weren't true friends around for a bit there... It's amazing what comes into your life, when you only permit what is good for you, and NEVER permit the #toxic.♡ Stopped to grab a "91 sister" preroll from @zenleafvegas on the way home. Was testing at around -15mg limonene -9 mg myrcene -and around 2-3mg of caryophyllene
It's Rare Disease Day and we found out today Myron has a very rare genetic mutation that has caused his epilepsy,  autism, global developmental delay, tremors and encephalopathy. His gene variant is on the NUS1 gene and only found in 3 other individuals so far. We have always known Myron is one in a million. He never seemed to fit well into any diagnostic profile until today. #shareyourrare
We are blessed to have two rare diseases in the family, Alpha One Antitrypsin Deficiency and OPMD. #shareyourrare here with me. Praying for treatments and cures for all. #autoimmunedisease #opmd #wegenersgranulomatosis What is your hashtag? 💙
As #rarediseaseday comes to an end, I'm so happy to share w/ you the zebra I've been working on this week. It's not 100% done but that's 👌. Compared to the brutal pain I was in 4 months ago, a ton of progress has been made. Drawing in & of itself is an accomplishment. EDS has taken so much from me & I don't want it to take drawing away too. This is the 1st drawing I've pretty much done since 2016 & it was nixe to get back at it. My parents said it's nice aeeing me draw again. I chose to draw a zebra in honor of rare diaease day bc there's a phrase in med school, 'When you hear hoofbeats,think of horses not zebras". This means to think of more common medical problems vs. the more rare ones. The zebra is also the mascot for EDS. Today is a day where thousands & thousands of people come together to raise awareness. Awareness ➡️education➡️knowledge➡️ research➡️ 🤞a cure/better treatment options. I deal w/ various medical issues every single day. I was thrilled to write an article for Love What Matters. I briefly summarize the past 13 years of my life w/ pictures, enduring 35 surgeries, dealing w/ the mental aspect & trying to raise awareness for EDS. Go to 'My Story' & swipe up to read OR click the link in my bio. Since it is Rare Disease Day, I would ❤ if you would share on Facebook, Twitter, however you want to. The more EDS awareness the better. You never know if one share can change someone's life. It's over 8,500 FB shares. Let's see if it can be at 9,000 come morning. . . . @ehlers.danlos @ehlersdanlosuk @rarediseasedayus @healthbeme . #shareyourrare #dazzletogether #ehlersdanlos #ehlersdanlossyndrome #invisibleillness #invisibledisabilities #chronicpain #chronicillness #hypermobility #smilethroughthepain #butyoudontlooksick #spoonielife #spoonie #zebrastrong #zebra  #spinalfusion #scarsarebeautiful #scoliosis #themoreyouknow #artist #drawing #prismacoloredpencils #showyourstripes #knowledgeispower #daretoberare #showyourrare #research
Today is Rare Disease Day // My heart is full of gratitude for our beautiful daughter. Sending love to all those living with a Rare Disease. 💕 .. .. .. #rarediseaseday #shareyourrare #systemicmastocytosis #chemotherapy #ondayatatime #childhood #thursdaymotivation #oceanview #santabarbara
“I’ve only read abt this condition in medical books”. This is what one dr told me when I was first diagnosed with Chiari 1 Malformation, a condition where the lower part of the brain extends down into the spinal canal.  In other words, the brain is pushing out of the skull causing brain stem compression, which blocks the flow of cerebrospinal fluid, and sometimes the blood supply to the brain stem itself.  This affects the nervous system and creates a variety of symptoms!! . . One of the major obstacles Chiari patients face is that it seems like no one has heard of the condition. The lack of awareness creates an additional burden for patients as they try to explain what they are going through!  We need to raise awareness so that patients can be identified! . . I was one of the lucky ones! I was referred to a dr who knew exactly what Chiari was and everything this condition entailed! My surgery was performed at LeBonheur Children’s Hospital, a hospital within the Children’s Miracle Network!  My entire team of doctors and nurses were familiar with this condition and THAT is the difference AWARENESS makes! ✨it’s time to EDUCATE, FIGHT, and CONQUER CHIARI!! 💜 Alone we are rare. Together we are strong!! 💪🏼 . . . . #rarediseaseday #showyourstripes #shareyourrare #chiariwarrior #chiarimalformation #conquerchiari #cmnh #childrensmiraclenetwork #lebonheurchildrenshospital #brainsurgerysurvivor #misstupelo #missms2019 #missamericaorganization
So, I really hesitated in doing this because typically this isn't something I like to broadcast to the world. That being said, here's my #rarereality . Some days are good, like in my first picture, I can go out and do all the things I want to without having to think about it (too much). Other times, not so much. Sometimes it's debilitating pain, endless appointments, and more doctors than you can count. I've spent years of my life in and out of hospitals for this, that, and the other. It's not pretty or glamorous, and it sure as hell isn't easy, but this is me. This is to everyone who is struggling, life may be hard, and there's no guarantee that it will get any easier, but life, even when it's difficult, is absolutely beautiful and without a doubt, worth it. ° ° #rarediseaseday #shareyourrare #sicklecell
Writing again. Painful but the kind of pain that reminds me I’m growing. #waylonswarrior #shareyourrare #curecmd #momblog #specialneedsmom #musculardystrophy
It's #rarediseaseday , a day for those of us with rare diseases to band together for support and awareness. A rare disease is the US is considered any disease affecting less than 200,000 people, with many affecting far fewer people than that. When your disease affects 1 in a million, it's easy to feel alone. However, with over 7,000 rare diseases out there and 1 in 10 Americans affected, as a community we're not that alone after all.  Like many people with rare diseases, I have more than one. I have a Primary Immunodeficiency called CVID. I also have a connective tissue disorder called Ehlers Danlos Syndrome. Most people with EDS fall into a specific subtype, however my subtype is unknown. To date, I'm the only person the geneticist knows of with my specific genetic mutation and my symptoms don't quite look like everyone else's. It's extremely rare for example for EDS to cause the need for supplemental oxygen like mine does. It is believed to most likely be the Myopathic EDS subtype, which is a combination of mitochondrial disorder and EDS. Testing this week unexpectedly showed that the mitochondrial disorder part may be more of an issue than we previously thought.  There's no cure for CVID or EDS, they've become my new normal. But thanks to my team of doctors, my infusion clinic community, support systems like caringbridge.org, and days like today, I know I don't have to go through it alone. Thank you also to the wonderful friends and family that continue to support me throughout the years. "Alone we are rare, together we are strong" #showyourstripes #shareyourrare #worldrarediseaseday #cvid #ehlerdanlos #spoonie
🦓Today is #rarediseaseday 🦓 There are over 7,000 rare diseases, 80% caused by a defect in genes and 95% with no known cure or FDA approved treatment. Some diseases aren’t necessarily rare but rarely diagnosed. Rare disease day is important to bring awareness to how much research is still needed and to help reduce the feelings of isolation and feeling misunderstood. Chances are there is someone in your life with a rare illness and they fight daily to cope with the challenges it brings. To all those struggling, you are loved, and we believe you and your struggles! ❤️🦓••••••••••••••••••••••••••••••••••••••••••••••••••••• I am proud to #shareyourrare for #eds and its complications. I refuse to be silent and be defeated by #chronicillness. ••••••••••••••••••••••••••••••••••••••••••••••••••••• #awarecauses #rarediseaseday2019 #ehlersdanlossyndrome #bendynotbroken #hypermobility #hypermobile #orthostaticintolerance #posturalorthostatictachycardiasyndrome #pots #mitralvalveprolapse #histamineintolerance #mcas #mcad #gastroparesis #ibs #gerd #autonomicdysfuction #dysautonomia #zebrastrong #zebrawarrior #dazzletogether #iamrare #chronicfaitgue #chronicpain #invisibleillness #spoonie
#shareyourrare #rarediseaseday2019 @robertdowneyjr
Last one ! Normal spinal fluid (csf) pressure for adults ranges from 7-18 with 25 being considered elevated - in the pediatric population pressure range is a bit wider with the high end cut off being 28 - #reo last #lp showed a pressure of 48 ! Talk about pain in the brain 🧠 #iih #shareyourrare #rarediseaseday
The light of my life: #adrienmichael  #shareyourrare #smithlemliopitzsyndrome #rarediseaseawareness
I wear this ribbon and shirt in the fight for rare disease awareness,  because with out it , more people like my wife would go undiagnosed , without a cure, suffering even greater without treatment~  Bobby  #formyqueen #shareyourrare  #hopeitsinmygenes #wrdd2019 #worldrarediseaseday #careaboutrare  #rarediseaseday2019 #globalgenes  #supporthero #caregiver #beyondherbattle #spooniesupport Her Rares: 🦓#dercumsdisease  #adiposisdolorasa 🦓#eds 🦓#mcas 🦓#crps  #mixedconnectivetissuedisease 🦓#chiarimalformation 🦓#hsd 🦓+ 10 other co-morbities  Please and Thank you for your considerate giving, for all the Zebras our there .... You can copy link to donate below and follow steps 1-4  To Donate for a cure to the TREAT research for program  https://www.uafoundation.org/NetCommunity/Page.aspx?pid=364  1 Choose College of Medicine  2 Enter the amount you wish to give.  3 Go to the designation dropdown and click on “Other.” 4 Write in the name of the fund:  TREAT 20-10-2503 Click “Add Donation”
Wearing their stripes in recognition of their cousin and Rare Disease Day!  We love you Clement and are so very thankful for you!  We celebrate your differences and all the ways you are #morealikethandifferent . . Swipe left to see the cutest 5 year old boy ever and take a hot minute to check out my previous post to learn about our nephew and the unique way God perfectly made him. We love you, Clement, and are thankful we get to call you ours. #raredisease #fhs #floatingharborsyndrome #shareyourrare #showyourstripes #clemmyboy
💕❤💕❤💕❤💕❤💕❤💕❤💕 Did you know I'm rare⁉️😎✌ This goes out to ALL my fellow RARE friends 🙂🤗 Today is #rarediseaseday❗🌞 💕❤💕❤💕❤💕❤💕❤💕❤💕 This is the day I try and spread as much awareness for Hirschsprung’s disease as possible. 1 in 5,000 babies are born with this disease, me being one of them. There is not enough known about it, as a result what happens after surgery is all a very stressful guessing game. God healed me through my doctor and nurses' hands and though my wonderful family & friends praying for me when I was a baby 🍼. I've been 100% fine ever since 💁‍♀️! Thank you God for healing me and making me RARE. 😊💗 #someonewhoisrare 🤩 #shareyourrare #hirschsprungsdiseaseawareness ❤ #hirschsprungsdisease #doctorsrock ✌ #godisgreat 💁‍♀️ #normalisboring 💩 😉 #berare
Fact 9! Are you sick of me yet ? (I think I’m sick of me ) #iih has no set diagnostic criteria unfortunately so can be miss diagnosed - common features neurologist look for include ; symptoms !, papilloedema, visual field testing , lateral recurs muscle weakness and increase spinal pressure - spinal pressure is measured by lumbar puncture (aka a spinal tap) #shareyourrare #rarediseaseday
Getting closer to my 7 day goal of no seizures, DavidBowiecorn is sharing powers to help me get there  #shareyourrare #nationalrarediseaseday #mctd #narcolepsy #cataplexy #seizuressuck #brainproblems #tokidoki #davidbowiecorn #unicornpower #spoonieofinstagram #nerdygirl
Happy rare disease day? Jeez. There’s a day for everything. Well time to bandwagon this bitch.
If we could go back and hold Brooks in our arms with the gift of clarity (i.e. knowing that he had Galloway Mowat Syndrome), it would have felt like we had more time with him. Clarity gives you a sense of control with the time you have left. It gives the family the gift of being able to give all that they can and not feel like they had more to give when time has run out.  Be kind to yourself. #forbrooks
Today is Rare Disease Day!  My posts are to help raise awareness for the 7,000+ rare diseases that many of them only affect 100 or less people.  Many of these individuals are left without proper care and treatment or proper insurance coverage.  I love this day to bring light to all those individuals and their families that face rare diseases and I especially like to share about my favorite little boy!  My son Clement has Floating Harbor Syndrome (FHS). This is a very rare syndrome; based on literature, there are only 50-100 individuals diagnosed worldwide.  FHS causes delayed bone age (slowing of the mineralization of the bones)- he is teeny tiny for his age, delayed speech development, (typically, individuals have severe expressive language delays), and distinctive facial characteristics (try not be jealous but he has THE BEST lashes EVER!). Some other symptoms include gastroesophageal reflux, farsightedness (hyperopia), crossed eyes (strabismus), recurrent middle ear infections, and conductive hearing loss.  In Clement’s 5 years, we have faced a lot of challenges including severe eating issues and A LOT of vomiting, but Clement has also made great progress.  It has been almost 2 yrs since he was diagnosed with FHS. Knowing that he has FHS has helped us take on challenges and be more successful however, with FHS being so rare, like other rare disorders, there is little information out there.  This causes a delay in many individuals being diagnosed which leads to difficulties accessing appropriate treatment and poor health insurance policies that do not cover what individuals need to be functional and live as independently as possible.  So we are doing our part today by wearing our stripes!  Feel free to join in!! #showyourstripes #showyourrare #shareyourrare #rarediseaseday #morealikethandifferent . . . . #floatingharborsyndrome #perfectlymade #clemmyboy #hescool #myfavoriteboy #bestlittledude #superboy #raredisease #rarediseaseday2019 #showyourrare
Brooks made a lasting impact that will forever shape us in the small amount of time that he was with us. Please consider donating to our Field of Genes campaign. Link in bio.
When dealing with a rare disease, you are alone. If we can give one family the gift of support then we consider this campaign a success. Link in bio. #rarediseaseday #forbrooks #togetherwearestrong
Rare: adjective - not found in large numbers and consequently of interest or value; not occurring very often. Synonyms: infrequent, few and far between, scarce, sparse, scattered
Alone we are rare #togetherwearestrong. Link in bio.
With your support, Dr. Sweetser can help patients and their families find the pieces to their rare puzzle. Link in bio. #forbrooks
As a parent, learning that your child is sick is never easy, but not knowing what’s wrong with them is paralyzing. That’s why we’re announcing the launch of our Field of Genes campaign, which coincides with International #rarediseaseday. Please support Dr. Sweetser’s work and join our campaign to help other families find the answers they need. Link in bio.
BEcause of Brooks’ doctor at MassGeneral Hospital for Children, Dr. Sweetser, we now know what rare disease our son had. There are so many people out there that live with the unknown and still don’t know. #rarediseaseday
Thank you for following us today! We hope to raise awareness that while individual diseases may be rare, the total number of people with a rare disease is large. By following us today, we hope that you feel the impact that our son Brooks had on our lives. #rarediseaseday #forbrooks #togetherwearestrong
Heute ist #rarediseaseday! Dabei geht es darum auf seltene chronische Erkrankungen wie eben Mukoviszidose aufmerksam zu machen. Unsere Dose vom Dezember im @nostromo_goerlitz brachte übrigens stolze 110€. Danke! ❤️ #mukoviszidoseev #rarediseaseday #unbezahlbarland #zittau2025 #instagood #charity #cysticfibrosis #unsignedartists #band #shareyourrare

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