Instagram tag raredisease

.
life update number two:
so i finally had a follow up cardiologist appointment
. life update number two: so i finally had a follow up cardiologist appointment this week. we went over the results from my heart monitor and he said everything came back fairly normal. the times it peaked the highest were while i was at dance practice (no surprise there) and he said that whenever my heart rate spiked it was between 150-200bpm. there were also time periods it would consistently stay above 150bpm for an extended period of time, and based on the time periods he gave me we concluded those were also during practice. however i remember clearly that i had a good amount of breaks at those practices, far long enough for my heart rate to go back down like it normally should. the fact that it didn’t, and still doesn’t, is weird, and i remember how hard it was for me to breathe during those times. i also mentioned how it’ll rise for no reason at all at times, and when i stand. he told me that his best guess for what i have going on could be inappropriate sinus tachycardia. he said if that’s the case there’s not much i can do about it, and that i’ll likely grow out of it. he once again told me to up my salt intake like he did the first time. both he and the cardiothoracic surgeon want me to do a lung function test to see if the problem could lie in my lungs not taking in enough oxygen when i breathe, possibly because of my scoliosis, shifted ribcage and slightly misshapen chest cavity which may cause them to not expand fully. i feel like these appointments should be answering questions, yet time and time again they just leave us with more and more questions. now we await my genetics results, the neurologist, a follow up with the rheumatologist, and a lung function test. yay 😬 3|20|19
20.03.2019 23:36:38
We all face some battle everyday. 💜
I'm not one to judge whether one person's ba
We all face some battle everyday. 💜 I'm not one to judge whether one person's battle is greater than another. I just believe part of my purpose is to encourage people like me. Strong people that strive to show up and be great everyday, while simultaneously fighting against pain that would cripple "normal/healthy people". ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ 💜I promise this isn't the post that tells you to "fight through the pain" or "just believe in yourself" not even to "keep the faith" ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ 💜All I know is what I experience · A strong will to accomplish my dreams and goals · Chronic, consistent and increasing pain because of my disease · A constant battle within of which one will win each day ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ 💜What I've realized · My goals and my illness don't have to compete with one another · I can put in work to accomplish my dreams and pause when needed to cry when I feel pain · I don't have to apologize to, explain to, or cover up for people a disease that I can not control. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ I am great and I can do great things despite my illness. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ #HSwarrior💜
20.03.2019 23:31:13
Advertisement
Just about to partake of the #bluedream again. It was the very first medical-gra
Just about to partake of the #bluedream again. It was the very first medical-grade strain I *ever* tried (and that was after a looong abstinence due to a job)... I remember it felt like someone behind me had my pupils on strings and was tugging on them! And like someone was massaging my spinal column, and it made me feel like exercising...WOW, memories!). I don't get *that* intense of a feeling anymore, but it's still a *great* go-to for pain and muscle spasms, and stress. This was grown organically, by @sundaygoods . Purchased @az_nirvanacenterpv . 🌱 Thanks for ❤️ liking ❤️ if you did! 🌱Turn on post notifications for daily stuff to look at when you're hig...uh, bored! 🌱 Licensed Arizona Medical Cannabis Patient in good standing. 🌱 Personal use only. 🌱 Nothing for sale ever. 🌱 Cannabis photos for educational/ gallery/ journal purposes only. 🌱 @milehighmj 😎 . . #cannabispositivememegallery#memes#420life#420#decriminalizemyprescription#hsp#infj#thehspinfj#hspinfj#soberstoner#rememberingshitsince2012#autoimmunedisorders#raredisease#chronicpain#ptsd#fibromyalgia#grief#antitrump#progressivepolitics#dailylaughs#genx
20.03.2019 23:30:20
📢 Calling EVERYONE & ANYONE with big ♥!⁣ ⁣
⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀
💪 Let’s #smas
📢 Calling EVERYONE & ANYONE with big ♥!⁣ ⁣ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ 💪 Let’s #smashSMARD & SAVE LIVES together! DONATE TODAY via the link in our bio! ⁣ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ 🔬Gene Therapy IS the solution, but it’s VERY expensive. $3 million expensive! EVERY PENNY COUNTS & Will fund SMARD1 #GeneTherapy research at Nationwide Children’s Hopsital ⁣ ⁣ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ 📚 To learn more, please like Smash SMARD or visit www.smashSMARD.org ⁣ ⁣ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⭐ Please participate, donate, and NOMINATE AS MANY PEOPLE AS POSSIBLE!! Copy and paste the body in the comments of your post! ⭐
20.03.2019 23:25:05
.
life update number one: 
sooo it’s been forever since i’ve posted and a lots h
. life update number one: sooo it’s been forever since i’ve posted and a lots happened since then. i never told y’all about my trip to urgent care in february so i will now. basically during one of the basketball games my team was dancing and cheering at, i began to feel a lot of pain in my left ribcage/abdomen. i brushes it off as a costo flare and kept going. after we performed out halftime at the boys game i was in a LOT of pain, but wasn’t cheering at the boys game so after we performed i was able to return to the bleachers and rest. then came the girls game, which i both cheer and perform at. after the girls halftime i was in an insane amount of pain, like a knife being driven into my ribcage. i knew it was definitely not the same as a costo flare. luckily my mom came to the game so i pulled her out of the gym and explained what was going on, in tears. something was seriously up, so i told my coach and we left the game to go to urgent care. [continued in comments]
20.03.2019 23:19:22
Advertisement
I dont know why I didnt throw the bottles away... I just started collecting them
I dont know why I didnt throw the bottles away... I just started collecting them. its probably 5 months worth. #meds#prescription#congenitalhyperinsulinism#raredisease#teva
20.03.2019 23:17:51
.@Pink help save our Willow!  @tweakes with @get_repost
・・・
Awesome St. Patrick’
.@Pink help save our Willow! @tweakes with @get_repost ・・・ Awesome St. Patrick’s Day at the P!nk concert Sunday night in NOLA! You all know I LOVE P!nk’s music and have been to many of her shows. * * * This one was different though – my daughters and I were on a mission. We used this concert as an opportunity to inform P!nk of a cause very deep to our hearts, Cure MSD, and ask her to use her voice and influence to spread the word and help with our global movement. MSD is a rare genetic disease impacting our sweet little friend, Willow. There are viable treatment options that can be developed – the only thing standing in the way of treatments and a cure for Willow and children like her is simply the lack of funding to bring the science out of the lab and into the bodies of these sweet babies. * * * With the help of Willow’s mom, the girls and I made a package for P!nk asking her to help us spread awareness and ask for donations. The package included hand written notes from each of my girls, tshirts, pins, bracelets, information about MSD, and pics of our sweet Willow. As we walked around the venue we had tons of P!nk fans stop us and ask to take pics with the package (a few are posted here). * * * During the performance we put the package on the stage but she didn’t see it and it was picked up by stage personnel. I just hope that it will eventually get to her because I have no doubt that if she sees it she will help! * * * Can you imagine the progress we could make with P!nk speaking out on Willow’s behalf! In the mean time, here’s how you can help: First share this post on all of your social media platforms and ask your friends/followers to also share it. Be sure to tag @pink , @curemsd and @smoothiekingcenter . Next, go to the Cure MSD page and make a donation. #whataboutus ❤️❤️❤️ #curemsd#repost#raredisease
20.03.2019 23:10:07
❤️❤️❤️❤️Peanie just home from the groomer ❤️❤️❤️❤️
.
.
🌱 Thanks for ❤️ liking ❤️
❤️❤️❤️❤️Peanie just home from the groomer ❤️❤️❤️❤️ . . 🌱 Thanks for ❤️ liking ❤️ if you did! 🌱Turn on post notifications for daily stuff to look at when you're hig...uh, bored! 🌱 Licensed Arizona Medical Cannabis Patient in good standing. 🌱 Personal use only. 🌱 Nothing for sale ever. 🌱 Cannabis photos for educational/ gallery/ journal purposes only. 🌱 @milehighmj 😎 . . #cannabispositivememegallery#memes#420life#420#decriminalizemyprescription#hsp#infj#thehspinfj#hspinfj#soberstoner#rememberingshitsince2012#autoimmunedisorders#raredisease#chronicpain#ptsd#fibromyalgia#grief#antitrump#progressivepolitics#dailylaughs#genx
20.03.2019 23:06:59
Sloane wants to also bring awareness to rheumatoid arthritis & other autoimmune
Sloane wants to also bring awareness to rheumatoid arthritis & other autoimmune diseases. Do you know that arthritis doesn’t discriminate in age? Children get arthritis at any age & it is partially hereditary. My worry is that Sloane will get RA, but I know what steps I need to take when we visit doctors. We always want to bring awareness to this invisible disease. • • • • #strongerthanra#fitaimee#ra#curearthritis#rheumatoidarthritis#invisibledisease#holistic#autoimmunedisease#rawarrior#kidsgetarthritis#rheum#motionislotion#ms#lupus#psoriaticarthritis#arthritis#worldarthritisday#raredisease
20.03.2019 23:06:58
Advertisement
The length of the #DNA that caps the ends of our 46 #chromosomes (blue), called
The length of the #DNA that caps the ends of our 46 #chromosomes (blue), called #telomeres (white), is thought to influence #cancer risk. @NIH@nationalcancerinstitute investigator Dr. Sharon Savage examines this link by studying the #raredisease dyskeratosis congenita.
20.03.2019 23:00:24
A little over two years ago, Devon and Josh received the news saying that Hollyn
A little over two years ago, Devon and Josh received the news saying that Hollyn’s newborn screening showed "borderline/abnormal for a metabolic disorder". The specific disorder according to her pediatrician involved a carnitine deficiency, which is the same issue they uncovered with Hadley. : The girls’ metabolic disorder interferes with the processing of food (in this case, fats) for energy production. It is a rare medical condition which occurs only in about 1 out of 100,000 births. The presentation does not fit the normal diagnosis because no genetic link can be found between the girls, leading doctors to believe there is another, undiscovered cause, for their shared metabolic disorder. The girls are currently being studied by the Undiagnosed Disease Network to find a cause.
:
Signs and symptoms of this deficiency include encephalopathy (severe brain dysfunction), cardiomyopathy, confusion, vomiting, muscle weakness, hypoglycemia (low blood sugar) as well as others. All individuals with Carnitine Deficiency are at risk for heart failure, liver problems, coma as well as other severe incidences. The girls must be watched very closely during periods of illness or during medical procedures to ensure their body is able to manage additional stress. : : We know it can be overwhelming to take in a lot of this medical jargon, but spreading awareness is something we want to shout loud about! Join us by heading over to our website and helping the girls’ with their medical expenses through the purchase of their tshirt!
20.03.2019 22:58:05
‘That’s a wrap for today Mum’ ✋ 💅
Well, that’s the walker finally gone - after t
‘That’s a wrap for today Mum’ ✋ 💅 Well, that’s the walker finally gone - after they didn’t collect it on the day they said they would, then turned up on two different days but didn’t tell us they were coming so no one was in 🙄 🤷🏼‍♀️ I’m so gutted for him. I was almost convinced he was going to get in it and start trotting about, strutting his stuff and crashing into everything. I guess it just wasn’t meant to be. 🌻 . . . #specialneedschildren#raredisease#neurology#undiagnosed#themumfeels#disability#disabilityawareness#iamable#mitochondrialdisease#genetics#epilepsy#medicallycomplex#developmentaldelay#specialneeds#mblog#senblog#blogger#honestmotherhood#motherhoodthroughinstagram#childhoodthroughinstagram#motherhoodunplugged#senparenting#whenibecameamother#mymotherhoodjourney#parenthood#walkingframe#riftonpacer
20.03.2019 22:43:10
Just wanted to do a little Myron update! He is having a great week. He had seizu
Just wanted to do a little Myron update! He is having a great week. He had seizures almost everyday last week, but it didnt1 affect him much. He has been so interactive and responsive to us. He also is babbling a lot and making more sounds and sound combinations than ever. Myron is considered "preverbal," but his speech therapist contacted me last week and we started him on a device all day at school to see if that can help him communicate more clearly. I am excited to see how that goes. Also, we are enrolling Myron in an NUS1 gene study! There is only one other participant so far. I hope we will learn more about others as the research team finds more participants through the larger gene testing companies. I am glad we are having a good month. We really needed a good season after this winter of never ending sickness. Myron has been so silly and happy despite having more seizuŕes. We are continuing to add higher doses on his meds because of them but are hoping we will find seizure control at lower doses than expected!
20.03.2019 22:34:12
Advertisement
So what is a ‘Rare disease’? (Joel's amazing story below) A rare disease is desc
So what is a ‘Rare disease’? (Joel's amazing story below) A rare disease is described as rare if its' prevalence is 1 in 10,000 people or less, which when combined, affect 6-10% of the population. There are around 8,000 known rare diseases. They often begin in childhood, definitive diagnosis is often difficult, they are uncurable and 1/2 of all cases are associated with neurological or intellectual disabilities. This year's ambassador is Cairns local, 14yo Joel Mundie. Joel was diagnosed with the rare condition Transverse Myelitis at just 6mths old. Transverse myelitis is an inflammation of the spinal cord, a major part of the central nervous system. When Joel was diagnosed, his mother Fiona was told all the things her son could not do and the family set out to give Joel every opportunity. Joel (pictured) recently competed in 12 races at the Queensland State championships taking home eight golds and ten Australian records. #StepOutsideMate#community#raredisease#volunteer#running#wheelchair#photography#thisisqueensland#seeaustralia#nikon#d810
20.03.2019 22:17:40
I have a chair in my tiny kitchen - so I can sit and breathe when I need to - ca
I have a chair in my tiny kitchen - so I can sit and breathe when I need to - cause I usually run out of air and my O2 saturation level still drops much lower than you want it to be 😉 // but my knife skills are getting better! #Dermatomyositis#Kitchen#Breathing#Cooking#autoimmunedisease#chronicillness#raredisease
20.03.2019 22:05:04
Did you know today is 'International Day of Happiness' 
#repost @modern.dictiona
Did you know today is 'International Day of Happiness' #repost@modern.dictionary...more
20.03.2019 22:03:45
WHAT IS ASPLENIA?

IT IS THE ABSENCE OF A SPLEEN

Isolated Congenital Asplenia (
WHAT IS ASPLENIA? IT IS THE ABSENCE OF A SPLEEN Isolated Congenital Asplenia (ICA) is a birth defect in which one of the following occurs: there is no spleen there is only a splenic remnant a spleen is present but non-functioning •IT IS A PRIMARY IMMUNODEFICIENCY ICA causes life threatening infections because without the spleen there is not an adequate defense against encapsulated bacteria. •THE SILENT KILLER Although rare, ICA is severely underdiagnosed as it is usually only discovered at autopsy after a child has died suddenly from sepsis. OUR MISSION •INCREASE AWARENESS Currently the only organization in the world focused on Isolated Congenital Asplenia, T.E.A.M. 4 Travis will draw attention to this rare and deadly disease. •FUNDRAISING T.E.A.M. 4 Travis fundraising efforts are directed to further research of the genetic mutation that causes ICA, development of tests to diagnose the disease and creation of effective treatment plans. •SCIENTIFIC KNOWLEDGE T.E.A.M. 4 Travis embraces relationships with the world's leading researchers who are passionately dedicated to preventing childhood death from ICA. •EDUCATION FOR THE MEDICAL COMMUNITY T.E.A.M. 4 Travis aims to bring increased knowledge of ICA to medical and nursing school curriculum. •FAMILY EDUCATION AND SUPPORT T.E.A.M. 4 Travis aims to provide information about ICA research to affected families. Once a test is developed, provide patient education for children and their families living with ICA. •TRAVIS' LEGACY OF LOVE To ensure Travis' exuberant love of life will carry on forever, by ending asplenia mortality. T.E.A.M. 4 TRAVIS Together Ending Asplenia Mortality ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Allison (D’Ambrosio) Bones President PO Box 361 Litchfield Park, AZ 85340 623.693.3317
20.03.2019 22:00:02
Elijah will celebrate his 2nd birthday in exactly one week; on Wednesday, March
Elijah will celebrate his 2nd birthday in exactly one week; on Wednesday, March 28th. We are soliciting your support. Please consider giving to E.WE Charities as we start the journey toward serving families affected by Trisomy 18. Currently, we can only accept contributions via cashapp: $ewecharities [cash.me/$ewecharities], via cash, or by check payable to E.WE Charities. We hope to have other methods of giving available soon. Please also consider wearing light blue, the T18 awareness color, on this day. If you choose, send us a picture using the hashtag #TeamElijah. You can contribute to E.WE Charities at any time. However, this specific campaign starts today and will extend until March 31st. Thank you in advance for your support! #TeamElijah#Trisomy18#T18#specialneeds#genetics#edwardssyndrome#healthcare#medical#physician#specialists#hospital#pediatrician#gastroenterology#brain#chromosomeabnormality#geneticabnormalities#extra#chromosome#raredisease#advocacy#birth#access#children#treatment#nutrition#medicine#risk#management
20.03.2019 21:57:34
march is also autoimmune disease awareness month!

while EDS is not autoimmune (
march is also autoimmune disease awareness month! while EDS is not autoimmune (a common misconception) i do have secondary autoimmune rheumatoid arthritis. this comorbidity itself sure isn’t my most problematic, but finding medications to treat my RA has been quite the challenge. RA is typically treated with low dose chemotherapy agents and/or immunosuppressants, both of which have caused me lots of issues. my last hospitalization was due in part to methotrexate, as it exacerbated a virus in my stomach lining. another RA medication we tried caused me to have rapid hair loss. which has lead us to drug number four, sulfasalazine, that i take four times a day. even mild cases of RA, like mine, need to be treated aggressively, as one bad flare could lead to permanent disfigurement. did you know that one in five people have an autoimmune disease?
20.03.2019 21:53:03
Over the years, Jenn Caruso learned that in order to take care of her son 👩‍👦, s
Over the years, Jenn Caruso learned that in order to take care of her son 👩‍👦, she needed to take care of herself first 💝. On the latest @Jerry_Cahill CF Podcast, Jerry chats with Jenn Caruso about being a mother to a son with cystic fibrosis 😷, self-care, and the finding a balance between the two ⚖️. Listen to the full pod here in our bio!
20.03.2019 21:48:58
Elijah will celebrate his 2nd birthday in exactly one week; on Wednesday, March
Elijah will celebrate his 2nd birthday in exactly one week; on Wednesday, March 28th. We are soliciting your support. Please consider giving to E.WE Charities as we start the journey toward serving families affected by Trisomy 18. Currently, we can only accept contributions via cashapp: $ewecharities [cash.me/$ewecharities], via cash, or by check payable to E.WE Charities. We hope to have other methods of giving available soon. Please also consider wearing light blue, the T18 awareness color, on this day. If you choose, send us a picture using the hashtag #TeamElijah. You can contribute to E.WE Charities at any time. However, this specific campaign starts today and will extend until March 31st. Thank you in advance for your support! #TeamElijah#Trisomy18#T18#specialneeds#genetics#edwardssyndrome#healthcare#medical#physician#specialists#hospital#pediatrician#gastroenterology#brain#chromosomeabnormality#geneticabnormalities#extra#chromosome#raredisease#advocacy#birth#access#children#treatment#nutrition#medicine#risk#management
20.03.2019 21:44:42
Just a few more pictures from the @makeawishtexasgulflouisiana office. Big thank
Just a few more pictures from the @makeawishtexasgulflouisiana office. Big thank you to the office staff for being so accommodating and even bigger THANK YOU to Andrea. To put as much time, effort, blood, sweat and tears into granting wishes as you do... You deserve every single ounce of goodwill that comes your way. Thank you, thank you, thank you. Truly. This would not have been made possible without you.
20.03.2019 21:44:28
Our 3rd day of our lovely holiday in Lisbon and I awoke to a WhatsApp picture of
Our 3rd day of our lovely holiday in Lisbon and I awoke to a WhatsApp picture of a baby scan which had been sent to me..... it set the tone of the day and I couldn't really shake the funk I was in. We spent the day in #belem seeing the sights and got completely sunburnt!!. This evening we went to #treestory_lisbon and had one of the BEST meals we've ever eaten!!! To say this cheered me up is an understatement!!! #Khachapuri#kababi . . #slimmingworldmafia#raredisease#wellbeing#mentalhealthawareness#ivfuk#ivfsupport#ivfjourney#ivfsurvivor#infertilitysucks#ttc#infertility#slimmingworld#papillorenalsyndrome #pax2gene#continuetosparkle#ttcjourney#ttcsisters#ttccommunity#renalcolobomasyndrome#pgd#kidneydisease#slimmingworldmeals#extraeasy#slimmingworldfamily
20.03.2019 21:43:24
It’s not the load that kills you. It’s the way you carry it. -Dave Manley. #pmdf
It’s not the load that kills you. It’s the way you carry it. -Dave Manley. #pmdfoundation#teamjaden.#raredisease
20.03.2019 21:40:37
"My personal motto is: I have sarcoidosis, but it does not have me" – Regina G.,
"My personal motto is: I have sarcoidosis, but it does not have me" – Regina G., Sarcoidosis Patient⠀ ____________________⠀⠀ If you would like to the opportunity to be featured on our Instagram, visit the link in our bio and go to ‘Get Involved’ -> ‘Share Your Story’. Or, tag your photo with #FSRwarrior and a quote then we might feature your story!⠀⠀ ____________________⠀⠀ #sarcoidosis#StopSarcoidosis#ChronicIllness#ChronicPain#RareDisease#nonprofit#InvisibleIllness
20.03.2019 21:30:29
Just when I thought I had everything in place and a great plan for my baby boy I
Just when I thought I had everything in place and a great plan for my baby boy I’m told he is positive for Angelman Syndrome... I don’t know what to feel anymore #disoriented#angelmansyndrome#raredisease
20.03.2019 21:28:57
April is Fabry Awareness Month. Please show your support by purchasing a tattoo.
April is Fabry Awareness Month. Please show your support by purchasing a tattoo. #BeRareBeYOU#FabryAwarenessMonth#FabryAustralia#RareDisease
20.03.2019 21:13:29
Another nice Tarma Designs piece is now on the raffle page. 
Thanks so much to G
Another nice Tarma Designs piece is now on the raffle page. Thanks so much to Gina and Brian at Tarma Designs!! See all on the Raffle Page at >> https://www.thebigrideforeb.com/cool-stuff-for-sale 🦋🚴‍♂️🦋 #eb#ebawareness#thebigrideforeb#judethecat#ebsucks#needacure#2019-2.0#epidermolysisbullosa#kickingass#whoooooo#doitagain#dontquit#raredisease#biketouring#rowan#sometimes#anythingcanhappen#hope#anna#believe#moretodo#roadythecat#castlecares#whitecastle#keepgoing
20.03.2019 21:05:54
A massive shout-out to two of our amazing London Marathon runners this year, Mic
A massive shout-out to two of our amazing London Marathon runners this year, Michelle Reynolds and Sharon Whittaker. ⁣ ⁣ Not only have they been training hard and putting in the miles, but at the weekend they also found the time to put on a St Patrick’s Day Event to help reach their fundraising target. ⁣ ⁣ The girls absolutely smashed it, raising a phenomenal £6,700, bringing their overall total raised to date for Liberty’s Legacy and @bonecancerresearch to over £10,000!!!! Wow, wow and wow!!!⁣ ⁣ Michelle said “We are absolutely thrilled with how much we raised, onwards and upwards! Now I just have to run the damn thing!”⁣ ⁣ We are absolutely blown away by their efforts and honestly can’t thank them enough. You so rock #TeamLibs! ⁣ ⁣ #LibertysLegacy#EwingsSarcoma#ChildhoodCancerAwareness#BCRT#UntilTheresACure#LondonMarathon#raredisease#Sarcoma#BoneCancer#Cancersucks#ForeverFourteen#Charity#Community#Fundraising#Cancer#virginlondonmarathon
20.03.2019 21:05:10
Are you passionate about driving change in #healthcare? We're thrilled to sponso
20.03.2019 21:04:33
Most people with PWS are social and enjoy spending time with family and friends.
14 0
Most people with PWS are social and enjoy spending time with family and friends. Data from the Global PWS Registry gives us insight into friendships and people with PWS. Click on the link in our bio to learn more in our recent blog on friendships in PWS. 👫 Do your kids enjoy spending time with friends? 👫 #praderwilli#FPWRresearchplan#FPWRresearch#PWS#pwsawareness#FPWR#onesmallstep#TeamFPWR#raredisease#specialneeds#careforrare#celebraterare#livelifefull#praderwillisyndrome#praderwilliawareness#GlobalPWSRegistry
20.03.2019 21:04:26
Mom has been unbelievably sick the last two days. We can’t seem to shake the fev
Mom has been unbelievably sick the last two days. We can’t seem to shake the fever 🤒! I never leave her side except to stretch my legs with Dad, eat and go outside. Many prayers appreciated. #thisismyjob 🚨🐾#compromisedimmunesystem#undertreatment#raredisease . . . . #medicalalertdog#servicedog#sdit#labradoodle#doodle#doodlesofinstagram#cutenessoverload#pawsforservice#puppy#puppiesofinstagram#ilovemydog#doodles#doodlepuppy#instagood#like#follow
20.03.2019 21:02:01
💡DID YOU KNOW? Between 1973-83, fewer than 10 treatments for #rarediseases were
💡DID YOU KNOW? Between 1973-83, fewer than 10 treatments for #rarediseases were approved. Since 1983, the Office of Orphan Products Development (OOPD) program helped develop and bring 400+ drugs and biologic products for rare diseases to market . . . #BluGenesFdn#babies#children#raredisease#taysachsdisease#infant#blugenes#geneticdisorder#infancy#hope#taysachs#showyourrare#rarediseaseawareness#care4rare#awareaboutrare#rarewarrior#genetherapy#research#UMASS#donation#cure#umassmed#linkinprofile#therapy
20.03.2019 21:00:32
Please welcome Hanna to the family. Hanna has Biliary Atresia Liver Disease. Her
Please welcome Hanna to the family. Hanna has Biliary Atresia Liver Disease. Her portrait was painted by Ian Mohon!! We love it! @ianmohon
20.03.2019 21:00:09
Fantastic few days at the International Pediatric pain conference, so much so we
654 13
Fantastic few days at the International Pediatric pain conference, so much so we had to get everything reprinted after just a few hours on day one!! It was also a great trip because after getting a few messages from zebras in Panama I decided to arrange a meet up whilst I was here. It was amazing because almost all of them had never met another person with EDS and it was wonderful seeing them all share their stories and plan how they were all going to work together to improve things for those with EDS in Panama. We have an amazing global community building out there, energised to help us spread our dazzle. I will try and arrange these meet ups whenever I travel to give you all an opportunity to ask questions and meet other zebras in your area. Thanks for a great evening my Panama friends, and for the thoughtful gift 🦓
20.03.2019 20:59:10
Happy #WarriorWednesday! Today we are featuring the amazing Lily (age 8): “the o
Happy #WarriorWednesday! Today we are featuring the amazing Lily (age 8): “the older sibling of syngap sisters! At about 6-9 months old, we started noticing she wasn't hitting any of her milestones and we started with early intervention. Lily started sitting unsupported around 18 months, she crawled at 2 years, and walked at 2.5 years old. She was diagnosed with epilepsy just before age 3 and has gone through multiple medication changes to get her seizures under control. Lily has never verbally spoken a word and doesn't have the gross motor planning to sign. She communicates using a device with LAMP and with her many facial expressions and gestures. Lily has a smile as bright as the sun and shows her love with the biggest bear hugs and puckered up kisses. Lily loves water and roller coasters! She just started swimming for our local special olympics swim team and we couldn't be more proud. Lily is one determined little girl and always rises above her daily challenges!” - Mom #syngap1#syngap#epilepsy#raredisease#rarediseaseawareness#epilepsyawareness
20.03.2019 20:58:51
What’s your cause? Origami Owl jewelry is so easy to personalize. Their Force fo
What’s your cause? Origami Owl jewelry is so easy to personalize. Their Force for Good pieces support a different cause every month. And I donate 10% of everything I earn to MY cause, the CHARGE Syndrome Foundation. 💙 My mom’s current locket (swipe to see last photo) is a mix of heart awareness, CHARGE blue, and Deaf charms (ILY hand & butterfly. More examples of awareness jewelry in my stories (click on my profile pic). 💛 Please tell me about YOUR cause! And DM me if you are interested in a fundraiser! ❤️ #advocatelikeamother#medicalmama#advocacyjewelry#linkinbio
20.03.2019 20:57:28
‪Half of all #raredisease patients in America are children! I need your help to
72 0
‪Half of all #raredisease patients in America are children! I need your help to support those battling #rarediseases through @upliftingathletes. Pledge per rep I bench as I represent @widener_fb at @novafootball Pro Day. Help me make every rep mean more! #WeTackleRare Link in bio!
20.03.2019 20:55:11
We each have unique fears, unique situations and unique stories... just like we
We each have unique fears, unique situations and unique stories... just like we have unique DNA. Ignoring this is just as harmful as ignoring a symptom. Even with all of the amazing things that healthcare does... the current healthcare experience isn’t helping us live our best lives. •🍊🍊🍊 Healthcare provides average solutions for the average person. And only solutions that got their business model. But none of us are average. We are working toward creating an entirely new environment and culture for the world of health and wellness. That culture and environment is HumanCare. And HumanCare is designed to connect and empower everyone who is a part of it. It’s designed with the understanding that everyone has unique needs. It’s designed to uncover the truth and work for us, the people... not to work for the system. We are working on building HealthBeMe and growing the HumanCare Movement... we all deserve better. We are excited and inspired to grow our ability to fight for everyone. 🐝🍊 #healthbeme#webewarrior#humancare#webecreative#caremore#godogood
20.03.2019 20:40:13
Bladder cancer is any of several types of cancer arising from the tissues of the
Bladder cancer is any of several types of cancer arising from the tissues of the urinary bladder. It is a disease in which cells grow abnormally and have the potential to spread to other parts of the body. Symptoms include blood in the urine, pain with urination, and low back pain. . . . #cancer#raredisease#medicopedia#medical#urology#bladdercancer@medicopediawecareyourshealth
20.03.2019 20:39:06
Today marks the 1st day of spring, the Persian New Year,  and the festive holida
Today marks the 1st day of spring, the Persian New Year, and the festive holiday of Purim. Please show your support on this special day by making a meaningful donation to www.StandByEli.org #StandByEli#IStandByEli#ILoveSomeoneRare#IRF2BPL#Donate#CommunityMatters#CareAboutRare#RareDisease#Rare#DoSomethingPositive#Mitzah#NowRuz
20.03.2019 20:34:30
We are excited to be exhibiting at #ACMGMtg19 in just two weeks! Plan on visitin
We are excited to be exhibiting at #ACMGMtg19 in just two weeks! Plan on visiting the ACD team at booth #200. See you there! . . #ACD#CCDS#ACMG#creatinedeficiency#careaboutrare#raredisease#creatine
20.03.2019 20:32:11
La verdadera razón por la cuál no manejo 😋 No por que me marée o por que no oxíg
La verdadera razón por la cuál no manejo 😋 No por que me marée o por que no oxígene, sea despistada o no logre medir espacios. Deja tú la Disautonomía, los gritos!! 😱🤪😝🤣😂 #lol#disautonomia#soydisautonomo#raredisease#incapacidadinvisible#fun#dysautonomia#dysautonomiacourage#disease#enfermedadesraras#fatigacronica#justforfun
20.03.2019 20:29:26
this past week has been insane. thank you to everyone who has gone to see Five F
this past week has been insane. thank you to everyone who has gone to see Five Feet Apart💜 and thank you guys for all of the kind messages. Your love and support means the world! - - If you’ve seen it, let me know what you thought! #fivefeetapart#cysticfibrosis#cysticfibrosisawareness#spoonie#cf#raredisease#awareness
20.03.2019 20:25:57
Meet our warrior, Brynna! This precious girl is 3 years old and is battling Leuk
Meet our warrior, Brynna! This precious girl is 3 years old and is battling Leukemia. We sent some goodies her way to brighten her spirits and she happened to get her package on a yucky clinic day! Brynna LOVES her baby dolls so as you can see she is enjoying the new one we sent her. Can these pictures get any sweeter?Brynna has had a long battle with Leukemia but with God by her side she will not be moved. Always have hope, little one! ❤️
20.03.2019 20:18:25
Charcot Marie Tooth disease – also known as CMT – has nothing to do with teeth.
12 0
Charcot Marie Tooth disease – also known as CMT – has nothing to do with teeth. The disease – which shares many of the same symptoms as amyotrophic lateral sclerosis (#ALS) – causes progressive muscle weakness and loss of motor skills. Eventually the diaphragm becomes too weak to breathe. UT Southwestern is collaborating with a Massachusetts family to organize a #genetherapy clinical trial to treat the condition. The clinical trial is among several that #UTSouthwestern’s gene therapy program is organizing for a class of rare #neurological diseases largely overlooked by the medical field. #RareDisease#utswdiscovery#utswneurology#pioneering#groundbreaking#utswbrain
20.03.2019 20:15:16
I’m at the point that I’m tired of these so-called new age pharmaceuticals. It’s
I’m at the point that I’m tired of these so-called new age pharmaceuticals. It’s all about making money and providers/pharmacies do not tell patients about the 50 possible side effects. After you PURCHASE the medications you can read the long paragraphs of warnings. Anytime a medication has a “possible side effect”. I ALWAYS get side effects without fail. I messaged ALL my providers and my new pharmacy with an updated list of medications I can not take. Pharmaceutical companies are good at putting a disclosure for legal purposes. Well I’m going to document that I have disclosed what I’m allergic to. 👌🏽 #pharmaceuticalindustry#pharmaceuticalmedicine#readthewarninglabel#medicationsideeffects#mentalhealthawareness#bipolar#depression#raredisease#raregeneticconditions#hives#urticaria#hereditaryangioedema#angioedema#itchyskin#eczema#schizophrenia#mentalillness#autoimmunedisease
20.03.2019 20:15:13
I’m amazed by this kid.. She gets knocked down and bounces right back. She is so
I’m amazed by this kid.. She gets knocked down and bounces right back. She is so determined and such a Superhero. 🦸🏻‍♀️💚💜💪♿️ #cerebralpalsy#epilepsy#epilepsycantstopme#superhero#cerebralpalsyawareness#epilepsyawareness#warriorprincess#cpwarrior#epilepsywarrior#raredisease
20.03.2019 20:14:17
When you are “Chronically Ill” it is so hard to not live your life with that tit
When you are “Chronically Ill” it is so hard to not live your life with that title stamped across your forehead. Because let’s be real, our chronic illness will never let us experience a day with out them being recognized. But with this loud and bold title, it sure makes it hard to remember all the other titles we hold! Thank you @beautifullychaoticshop for reminding me of the 3 other hats I wear every day! Sure I am a chronic illness warrior, but I am also a wife, a momma, and a BOSS 💪🏽 those titles are what gives me the strength to be the fighter I am! #chronicillness#chronicpainwarrior#chronicfatiguesyndrome#chronicpainawareness#raredisease#rarediseasewarrior#rarediseaseawareness
20.03.2019 20:02:20
🇫🇷🇺🇸 Marie Greene est une des designers de mars, et son patron a été traduit spé
🇫🇷🇺🇸 Marie Greene est une des designers de mars, et son patron a été traduit spécialement pour l’écheveau solidaire en Français :) c’est elle qui a choisi parmi ses designs celui qui plaît le plus, grâce à son côté intemporel et le fait qu’il monte très vite! Il ne reste plus qu’une dizaine de jours pour faire un don à l’asso MASFD en achetant son patron. 🇺🇸Marie Greene is participating to the supportive skein challenge by donating the proceeds of her Stillwater cardigan to MASFD charity. Only few days left to buy it and raise money to find a cure to Fibrous Dysplasia, as she’s participating until the end of March. She choose herself this famous pattern and it looks like you still like it a lot!! #stillwatercardigan#oliveknits#mariegreene#raisingmoneyforcharity#letsfindacure#fibrousdysplasia#fd#raredisease#supportiveskein#challenge#echeveausolidaire#awareness#geneticdisease#dysplasiefibreuse#knitting#cardigan#handmade
20.03.2019 20:01:21
.
.
🌱 Thanks for ❤️ liking ❤️ if you did! 🌱Turn on post notifications for daily
. . 🌱 Thanks for ❤️ liking ❤️ if you did! 🌱Turn on post notifications for daily stuff to look at when you're hig...uh, bored! 🌱 Licensed Arizona Medical Cannabis Patient in good standing. 🌱 Personal use only. 🌱 Nothing for sale ever. 🌱 Cannabis photos for educational/ gallery/ journal purposes only. 🌱 @milehighmj 😎 . . #cannabispositivememegallery#memes#420life#420#decriminalizemyprescription#hsp#infj#thehspinfj#hspinfj#soberstoner#rememberingshitsince2012#autoimmunedisorders#raredisease#chronicpain#ptsd#fibromyalgia#grief#antitrump#progressivepolitics#dailylaughs#genx
20.03.2019 19:55:39
They call me a B I T C H 
I CALL IT #ADVOCATING

I really love presenting with a
They call me a B I T C H I CALL IT #ADVOCATING I really love presenting with a sense of humor. I have been attending #medical#conferences since my 20’s and have fallen asleep in far too many. This was several weeks ago presenting for a bio science firm that has for 80 years been the largest plasma producers. Five years ago they acquired the Diagnostics division from Novartis and have become the most trusted firm in blood technology. What is a progressive society to you? Is it AI? (Artificial Intelligence) Biggest and bestest in #technology? NOOOOO none of these matter as much as treating people with #disabilities,#rarediseases and #cancers at centers leading with empathy and with Dignity. Far too many times I was spoken to in a condescending way and it is a shame for #health professionals to behave this way. some of them just have too much #ego. Its always a numbers game in America…that is a huge problem when it comes to #healthcare - everything is a numbers game. WE HAVE TO STOP THIS. It is about human life!!! When the number of Thalassemia persons are only at 1,100 in the U.S. we are not receiving the freshest of #blood the way our #European patients are. In #England,#Italy#Greece#Cyprus and other nations, they receive blood that is 3-12 days old. #FDA approved for the U.S.A. is 42 days old. Bringing awareness to my Rare Disease #Thalassemia#ThalassemiaJourney#RareDisease#Policy#speaker#presenter#Advocate
20.03.2019 19:39:05
I decided to put on my glasses with my prism lenses in it so I could nerd out fo
I decided to put on my glasses with my prism lenses in it so I could nerd out for a bit this afternoon! I love these frames so much but the lenses over correct my vision so I never use them! I’m smiling so big because today is international day of happiness! I have no idea why my face is so red either! 🤷🏻‍♀️ Hope everyone has a happy day today! #nerd 🤓 #lifewithiih💙💚#raredisease#internationaldayofhappiness#happy#happiness
20.03.2019 19:33:00
Post 2/4:  Carley. “Being numb to it all is not the same as being safe in your F
Post 2/4: Carley. “Being numb to it all is not the same as being safe in your Father’s arms.” •••• It’s 💯 clear that meeting Carley and sharing the platform with her over the weekend was a God-ordained meeting. I feel like I’ve known her forever and can’t wait to get to know her and her beautiful family more. Plus, I know I’m supposed to tell YOU about them. (With their permission, of course;) ⁣ ⁣ Carley & her husband, Josh, are the parents of two, beautiful, girls who happen to have an extremely rare condition called Fucosidosis. So rare that these two sweethearts are #12 & #13 in the entire world, known to have it. There isn’t much knowledge about this disease but what I DO know is these two girls are THRIVING and the love and joy of the Lord radiates not only through their smiles and eyes but also the lives of Carley and Josh. ⁣ ⁣ Carley’s #faithoverfear testimony broke me and inspired me in so many, beautiful ways. I can’t wait to see how God uses their story to encourage others and bring awareness to Fucosidosis and others with rare diseases. ⁣ ⁣ Head to my bio link/Facebook page (Emily B Music) to see her incredible story and be BLESSED! ⁣ #showyourrare#raredisease#fucosidosis#worshipwednesday#womancrushwednesday#warriormom#choosejoy#encouragement#inspiration#faithnotfear
20.03.2019 19:29:14
Wednesday weigh in. Week 8 was a jump of 3 pounds leaving the building.  Been ba
Wednesday weigh in. Week 8 was a jump of 3 pounds leaving the building. Been battling my tastebuds this week. Grateful my brain and tummy are on the same team. The tastebuds keep telling me a chalupa sounds good, but my stomach and brain 🧠 keep reminding me how awful I felt after eating them. #onedayatatime#weightloss#chronicillness#pulmonaryfibrosis#cantdocardio#tireofbeingtired#lowcarb#keto#lowcarbhighfat#troublegettingcaloriesin#spoonie#interstitiallungdisease#lungdisease#lifeonoxygen#lifewithoxygen#raredisease
20.03.2019 19:20:23
Bumping into my bestie was the highlight of my day 🥰
.
Had a bit of a shitty app
Bumping into my bestie was the highlight of my day 🥰 . Had a bit of a shitty appointment with the colorectal surgeon as was meant to see the consultant but he didn’t turn up for the clinic so I saw another registrar 🙄 It looks like I’m going to need surgery to change my loop ileostomy into an end ileostomy 🙄🙏🏼 . Now to get through this colonoscopy tomorrow...💪🏼
20.03.2019 19:18:47
With today's glorious weather we thought it would be a perfect time to let you k
With today's glorious weather we thought it would be a perfect time to let you know how to sign up to our next fundraising event - The Windsor Park Walk. We are hoping to raise lots of money to fund research projects and build upon the current services for patients with AA; but, the event is also a fantastic opportunity to get together and meet others who have been affected by the disease. Please visit the website to sign up. #aplasticanaemiatrust#aplasticanaemiaresearch#fundraising#aplasticanaemiaawareness#raredisease#bonemarrowfailure
20.03.2019 19:16:42
Swipe left: Happy birthday Dad @young_ceejis ! Walking 👣 towards you ❤️ love Chr
Swipe left: Happy birthday Dad @young_ceejis ! Walking 👣 towards you ❤️ love Christi Jo Elle! You’re my first love ❤️ #daddydaughter
20.03.2019 19:16:25
This little monkey has been super challenging lately, between teething, being fr
This little monkey has been super challenging lately, between teething, being frustrated he can’t move as fast, and some behaviour issues that I’m not sure if they are related to his brain damage, if it’s his unknown genetic mutation or if it’s normal for him, I’m just spread a little thin. But when he’s sleeping I sneak into his room and just stare at my little miracle and then all the days stress melts away. I’m going to make an appointment with his neurologist to discuss the behaviours after his surgery. Surgery is on Friday so tomorrow we can’t give him medicine and have to make sure we get him fed enough before he has to stop eating so he’s going to be especially grouchy. Let’s just say Friday night I will be having a glass of wine. #yeg#sleepingbaby#babysleeping#wildhair#hemangioma#hemangiomababy#raredisease#avmsurvivor#strokesurvivor#geneticmutation#13q21#cute#ilovemyson#momlife#watchinghimsleep#love#myson#miracle#miraclebaby
20.03.2019 19:13:32
My cool kid rocking his #fdmas sunglasses on this pretty day #raredisease
My cool kid rocking his #fdmas sunglasses on this pretty day #raredisease...more
20.03.2019 19:04:16
Never underestimate another.  PRESUME COMPETENCY.  PRESUME UNDERSTANDING.

Littl
Never underestimate another. PRESUME COMPETENCY. PRESUME UNDERSTANDING. Little Miss Taylor received a tiny pink potty for Christmas so we could start working on potty training. We didn’t know what to expect and really didn’t know how to go about potty training....it’s not like there is a manual for potty training a child who has intellectual and motor delays. 🤷‍♀️ But this was just another glaring reminder, as I mentioned in a recent blog post (link in bio), to NEVER.UNDERESTIMATE.ANOTHER. We started by taking Taylor to the bathroom every two hours on a schedule and she quickly showed us that she knew exactly what to do. She started using the potty right away and has been consistent with it for the last three months. She is not fully potty trained yet. We still have a long way to go....but this is a GREAT start!! ❤️ It is always so amazing to see how much this little girl is absorbing and understanding about the world around her. #pottytraining#potty#disabilityisnotinability#pottytrainingtime#specialneeds#specialneedskids#disability#charlottenc#charlottemoms#kidsofinstagram#neverunderestimate#presumecompetence#raredisease#rarediseaseawareness#instakids#momswhoblog#momboss#momblogger#tellyourstory#movemountains#overcomer#sheknows#getitgirl#believe#believeinher
20.03.2019 19:01:03
The B.L.A.I.R. Connection project won CMPS Grand Champion at this year’s Florida
The B.L.A.I.R. Connection project won CMPS Grand Champion at this year’s Florida FPS Competition. While this is an incredible honor that shows the project’s development over the past two years, I believe that this is only the beginning for the website and can’t wait to continue working to expand it in the future. So excited to represent the website and siblings of the terminally ill at the International Competition in a few months!
20.03.2019 18:45:40
Some of you may have seen me post about one of the bravest families I know and t
Some of you may have seen me post about one of the bravest families I know and the sweetest little girl named Adeline and her battle with Schwachman - Diamond Syndrome. In an effort to help support this incredible family you can purchase one of my #rainbowsforadeline bags. All proceeds go Adeline and her fam. Fighting a rare disease isn’t easy and it definitely is not cheap. Link is in my bio. 🌈 #raredisease#supportyourfriends#thinkhappyfonts
20.03.2019 18:28:18
🚨Quinn's List Kid #32 has arrived home and couldn't wait to share the details of
🚨Quinn's List Kid #32 has arrived home and couldn't wait to share the details of his amazing trip to Disney World with us!🚨 from his mama... We are home and settled and couldn’t have dreamed of a better vacation. It was truly amazing and great creating memories for life💫 The resort was absolutely beautiful. Please pass on our thanks to the vacation club members who donated. We took the ferry boat and Easton didn’t know what to think about the breeze on his face but later loved it! Magic Kingdom was a fun day! Easton rode a couple of rides throughout the day and enjoyed the nighttime firework show. Easton also had a blast at Animal Kingdom - we even had a giraffe come SUPER close to our truck 😲. At our character lunch, Easton was in awe over all characters. He flirted with Daisy Duck quite a bit and made her blush. Of course when he saw Mickey, he was mesmerized and couldn’t stop smiling. That brought tears of joy for sure. We hit Epcot, Hollywood Studios and Disney Springs too. We want to thank you and your family SO very much for the opportunity to take that vacation!!! It was much needed and for once we didn’t focus on all the health issues and the negative but just let Easton be a normal toddler. We had a blast and are just blown away by everything that was put together for us!!💜 -- #QuinnsList#QuinnsListKid#MemoriesForLife#WishTrip#Disney#Mickey#raredisease#1in10
20.03.2019 18:25:00
So my son prompted this post. Last night taking off my makeup he mentioned my bi
So my son prompted this post. Last night taking off my makeup he mentioned my big circles under my eyes. My skin hasn't been the best since my diagnosis almost 8yrs ago. Long story short a few years ago I got into makeup. I am a cosmetologist so it's not a stretch. I've said it before and I'll say it again you do not have to wear makeup, I chose to because I love it. I call it my war paint. I'm sharing some of my go to's that I've used for awhile and one is a new product. #morphe is an awesome brand with great prices and I love their new concealor #morpheconcealer I pair it with my #urbandecay peach #nakedskin it works amazingly to help hide the dark circle under my eyes. Also for my older skin that is a bit dry I LOVE my #toofacedbornthisway foundation. I always go back to this. Its medium coverage and you can build it up. Also shout out to #morphexjamescharles#jamescharlespalette#jamescharles palette that im wearing love the pigment! #idontlooksickbecauseitrynotto#chronicillnesswarrior#invisibleillness#raredisease#chronicallyawesome#addisonsdisease#adrenalinsufficiency#autoimmunedisease#chronicpain
20.03.2019 18:16:10
"For my 21st birthday, I'm asking for donations to the Ehlers-Danlos Support UK.
"For my 21st birthday, I'm asking for donations to the Ehlers-Danlos Support UK. I've chosen this charity because their mission means a lot to me, and I hope that you'll consider contributing as a way of celebrating with me. Every little bit will help me reach my goal."⠀ ⠀ Huge thanks to Krishna for her Facebook Fundraiser to help us support the EDS community and fight for earlier diagnosis. Create your own Facebook Fundraiser (link in the bio!).⠀ .⠀ .⠀ .⠀ #dysautonomia#mastcell#hypermobility#bendy#fibromyalgia#chronicpain#eds#ehlersdanlos#fatigue#pain#chronicillness#physiotherapy#invisiblefight#hypermobile#mentalhealth#spoonie#raredisease#raredisease#spoonielife#invisibleillness#butyoudontlooksick#chronicallyill#ehlersdanlossyndrome#facebook#fundraising
20.03.2019 18:08:02
My nephew JJ is one of 52 children in the world with the rare genetic disorder c
My nephew JJ is one of 52 children in the world with the rare genetic disorder called Champ1. It was only discovered a few years ago so we are out trying to help raise awareness. It is only found through extensive genetic testing so there are probably many other children out there yet to be diagnosed. These parents all have children with speech and learning disabilities but some have to hear words that no parent should have to like seizures and leukemia and so much more. JJ is our little champ and the sweetest little 5 year old💜💜 Please wear purple today and tag me in your story or just repost this in your story so I can share it and we can help spread awareness. Thank you so much and have a blessed day! -Melanie #champ1foundation#CHAMP1JJ#champ1genemutation#yearofourchamps#raredisease#letsraiseawareness#puppy#dogsofinstagram#family#findacure#supportyourfriends#pawsforacause
20.03.2019 12:16:33
It's a good day for bubbles! #mommylife #boymom #bubbles #summerfun #myhappyplac
23.04.2017 18:01:28
Tomorrow I go in for my tracheal resection surgery. I'm pretty nervous about my
Tomorrow I go in for my tracheal resection surgery. I'm pretty nervous about my 1-2 week in-hospital recovery away from my little guy, but am fortunate to have such wonderful people in our lives to take care of him in my absence! Plus Daddy is flying out here to stay in the hospital with me for the first week ❤ #blessed#mommylife#guillainbarresyndrome#cidp#survivor#trachealstenosis
13.02.2017 15:51:56
Nerding out ❤#phoenix #arizona #adventure
05.01.2017 00:57:33
Good news at the neuro today!! My motor nerves are actually starting to heal, th
Good news at the neuro today!! My motor nerves are actually starting to heal, the first glimpse of maybe being able to have a life again one day!! ❤️ #guillainbarresyndrome#cidp#survivor#igg#ivig#medicalmarijuana#mmj#arizona
19.10.2016 17:48:06
Jameson's first train ride. He was stoked ☺️☔️️ #mommylife #mommasboy #arizona #
Jameson's first train ride. He was stoked ☺️☔️️ #mommylife#mommasboy#arizona#trains#goldmine#ghosttown
03.10.2016 01:02:57
Next
loading