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#rarereality

Posts tagged as #rarereality on Instagram

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Lilly was high risk of having downs syndrome at our first nuchal scan.  Getting a diagnosis for her syndrome is proving a little less straight forward!  But here's to all the wonderful humans rocking their extra chromosone xxx . . . . . #downsyndrome  #downssyndromeawareness  #teamzebedee  #zebedeemanagement  #zebedeemodel  #zebedeesquad  #childmodel  #curlyhair  #kids  #kidsofinstagram  #autism  #autismlife  #autismawareness  #autismwarrior  #aspie  #rarereality  #globaldevelopmentdelay  #gdd #gddawareness
Lilly wanted me to take a photo with our dog Kiba.  He's 10 years old this year and he's an alapaha blue blood bulldog.  He's the most patient gentle giant you could ever dream of! . . . . . #dogs #dogsofinstagram  #mydaughterandherdog #gentlegiant #alapahabluebloodbulldog #teamzebedee  #zebedeemanagement  #zebedeemodel  #childmodel  #zebedeesquad  @JNYKIDS  #autism  #autismawareness  #autismwarrior  #aspie  #rarereality  #globaldevelopmentdelay  #curlyhair  #kids  #kidsofinstagram
The final #aplasticanaemia facts for day, shared at the close of our spring awareness raising campaign. Thank you for sharing! As a result, many more people outside of our relatively small community of patients and families, will be aware of this rare life-threatening illness, how it is treated and the impact on people's lives.  #aplasticanaemiaawareness #rarereality #raredisease
Here are the penultimate #aplasticanaemia facts for the day, before we end the campaign tomorrow, spreading awareness of this rare life-threatening illness.  #aplasticanaemiatrust #aplasticanaemiaawareness #raredisease #rarediseaseawareness #rarereality #bonemarrowtransplant #bonemarrowfailure
Okama Rose, NDF Certified Patient Advocate, recently organized the first ever Patient Day on #gne #myopathy in the Ivory Coast, with support from NDF and in conjunction with #rarediseaseday. Nearly 50 people attended, including patients, family and caregivers, and an additional 80+ cases of myopathy were reached, thanks to support from national television and the BBC. #curehibm #gnem #raredisease #rarereality #hibm
This week will be the last one from our spring awareness raising campaign - sharing information, sparking discussions, spreading hope.  Please continue to engage and share our posts, thus helping us spread the word about #aplasticanaemia far and wide.  #aplasticanaemiatrust #raredisease #rarereality #bonemarrowfailure #aplasticanaemiaawareness
Posted @withrepost • @chect_uk Just because it’s rare, ⠀ doesn’t mean it isn’t there.⠀ ⠀ The two most common signs of eye cancer in children are a white 'glow' and a squint. ⠀ ⠀ #rarediseaseday #rarereality #retinoblastoma . . #eyesight #vision #visionmatters #kingslynn #dersingham #nofilter
Being a sibling is hard work.  They get on your nerves.  They get you in trouble.  They touch your stuff.  Mess up your bedroom.  Argue with you.  Breathe near you lol.  Being a sibling to a sibling with special needs can be that extra bit difficult.  They take a lot of attention.  You don't get to just talk as mum is sometimes occupied with supervising them, especially when out.  Plans get cancelled.  Or not even made due to their siblings needs.  Sometimes they're just impossible to get on with.  But i hope they all know how much they're loved.  And although I may get distracted.... a lot.  I see you!!!! . . . . . #specialneedssiblings  #bigsister #bornthisway  #notalwayseasy #notalldisabilitiesarevisible  #autismawareness  #autism  #sensoryprocessingdisorder  #undiagnosedgeneticsyndrome  #raredisease  #rarereality  #aspie  #autismmum  #autisticsister #teamzebedee  #zebedeemanagement  #zebedeemodel  #childmodel  #zebedeesquad  #memories
Written so beautifully by the lovely @purplefrangipani88 ❤️👏🏻in honor of rare disease day!!! Thank you Sheridan for sharing this beautiful work 🙌🏻#rarediseaseday #rarereality #raredc2019 #raredisease
Today we had an impromptu visit to @bewlwater  It was rather windy.  But we had a lovely walk identifying trees from their buds! . . . . . #teamzebedee  #zebedeemanagement  #zebedeemodel  #childmodel  #modelsearch  #kidsofinstagram  #autism  #autismlife  #autismawareness  #autismwarrior  #aspie  #rarereality  #globaldevelopmentdelay  #curlyhair  #kids  #rainbows  #rainbowkids
Today I challenged myself. I took a #selfie with the actual camera and not with Snapchat. That may not seem like much, but I can see my facial deformity SO much more in this picture than if the picture were through Snapchat.  Any other #rarewarriors experience something like this? ~ Also, please don’t tell me that you don’t see it. I do, I see it. And that’s what matters today 🤷🏼‍♀️ #selfiechallenge #fdmas #fd #mas #rarereality
The final blog in our Spring Awareness Campaign 'I'm Fantastic Not Aplastic' was written by the hugely inspiring Lauren from Australia. She explores an under-researched area of pregnancy and aplastic anaemia. "After my treatment for aplastic anaemia, my husband and I discussed the possibility of trying for another baby. The research out there was limited and the data - not all that reliable. Could I go through with a pregnancy and risk the very real possibility of relapse?" #aplasticanaemia #raredisease #bonemarrowfailure #aplasticanaemiaawareness #rarereality #aplasticanaemiatrust
Happy International Women's Day!  Being a woman is a wonderful and challenging thing. There have been, and often still are, many obstacles for us to overcome.  There are so many women that inspire me, but I'm particularly inspired by the incredible women that deal with health challenges (or care for people with) and have not let these challenges define who they are. You are INCREDIBLE! #womenempowerment . . . . . . . . . . . . . . . . #diabetes #type2diabetes #diabetic #diabetesandme #t2d #raredisease #lipodystrophy #chronicillness #metabolicsyndrone #polycysticovariansyndrome #familialpartiallipodystrophy #insulinresistance #bloodglucose #bloodsugars #insulin #bloodpressure #rarereality #internationalwomensday #cholesterol #lipids
Our final fact this week brings us back to one of the first line treatments for AA, a bone marrow / stem cell transplant.  #aplasticanaemia #aplasticaneamia #aplasticanaemiaawareness #raredisease #rarediseaseawareness #rarereality #bonemarrowtransplant #bonemarrowdonor
Raros pero no invisibles; leyes, métodos diagnósticos, formación profesional, soporte a la familia, empatía, fé y amor!!!#cln2,#enfermedadesraras,#rarediseaseday #rarereality #curebatten #battendisease #battenwarrior #showyourstripes
Really great read. Alice was 7 when she was treated for Aplastic Anaemia. Alice and her family had one hell of a journey. Alice also had no match for transplant and had immunosuppressant therapy. There’s not many stories like this as when a child gets diagnosed with AA most of them who have a match go straight to transplant. Part of me thinks there’s a reason why Marley got no match in 32 MILLION people? Surely. Maybe we’re meant to go down a different route 🤞🏻 Repost @aplasticanaemiatrust with @get_repost ・・・ Today, as part of the Spring Awareness Campaign ‘I’m Fantastic not Aplastic’, we share Alice’s experience of severe AA. “I remember while I was receiving treatment how desperate I had felt to be normal like my friends at school, to be able to play out, take part in the school sports day and spend time with my sister. But, years later when I finally started recovering, I remember feeling an overwhelming sense of panic”. With this penultimate blog in our campaign we come back again to explore the psychological impact of the disease. The negative effect of AA on mental health of patients and carers is profound, yet professional psychological support provision is patchy, inconsistent, difficult to access. Unacceptable.  #aplasticanaemia #aplasticanaemiaawareness #rarereality #raredisease #bonemarrowfailure #mentalhealth #aplasticanaemiatrust
Today, as part of the Spring Awareness Campaign ‘I’m Fantastic not Aplastic’, we share Alice’s experience of severe AA. “I remember while I was receiving treatment how desperate I had felt to be normal like my friends at school, to be able to play out, take part in the school sports day and spend time with my sister. But, years later when I finally started recovering, I remember feeling an overwhelming sense of panic”. With this penultimate blog in our campaign we come back again to explore the psychological impact of the disease. The negative effect of AA on mental health of patients and carers is profound, yet professional psychological support provision is patchy, inconsistent, difficult to access. Unacceptable.  #aplasticanaemia #aplasticanaemiaawareness #rarereality #raredisease #bonemarrowfailure #mentalhealth #aplasticanaemiatrust
Thank you to everyone who joined us for our March Patient HUDDLE. This virtual support group is led by patients for patients and offers a confidential forum to discuss important issues and concerns for those living with #gnem. Registration is now open for April's HUDDLE. Visit our website or DM us for more info.
Today as part of our Spring Awareness Campaign we share an insight into some historical facts about Aplastic Anaemia  #aplasticaneamia #aplasticanaemiaawareness #aplasticanaemiatrust #raredisease #rarediseaseawareness #rarereality #historyofmedicine #bonemarrowfailure
"Aplastic anaemia and bone marrow failure are very complex rare conditions, requiring the input of highly specialised caregivers who help to educate fellow staff, patients and their families. This sharing of knowledge is integral to my role and is one of the main reasons it has always appealed to me." One of the final three blogs this week, as part of our Spring Awareness Raising Campaign belongs to Simon, the brilliant clinical nurse specialist.  Visit the website to read Simon's blog in full  #aplasticanaemia #aplasticanaemiaawareness #raredisease #rarereality #bonemarrowfailure
Today's AA facts as part of our Spring Awareness Campaign share some facts about one of the first line treatments for AA.  #aplasticaneamia #aplasticanaemiaawareness #raredisease #rarediseaseawareness #rarereality #aplasticanaemiatrust  #bonemarrowtransplant #stemcelltransplant
#trisomyawareness #rarereality #soft_uk #raredisease
👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻 #rarereality #rareawareness #mentalhealthawareness #mentalhealthmatters
Today’s AA facts for the day shared as part of our Spring Awareness Raising campaign. Aplastic Anaemia is still a relatively little understood,  rare, life-threatening illness.  #aplasticanaemia #rarereality #rarebonemarrowfailure
💛💙💜💚❤ #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 -------------------------------
There’s a 1 in 3.5 million chance of a zebra being gold – the same odds as being diagnosed with Superficial Siderosis, so this is me. A gold zebra. Hell I’m practically a unicorn! 😂🦄🙌🏻•••••••••••••••••••••••••••••••••••••••••••••••••••••• In medicine, zebra is slang for ‘rare’ as doctors are taught to assume the simplest diagnosis is correct, rather than the rarest. The saying goes: ‘when you hear hoofbeats expect horses not zebras’. Today the zebra is also a symbol of rare disease recognised by warriors the world over. Naturally, I think zebras are the bomb.💥 •••••••••••••••••••••••••••••••••••••••••••••••••••••• #zebra #deborahthezebra #showyourrare #thisisme.#rarereality #neuropathy #chronicpain #rarediseaseday #rarediseaseday2019 #rarediseasewarrior #chroniclife #chronicpainwarrior #raredisease #superficialsiderosis #invisibleillness #brain #spine #positivevibes #fibromyalgia #fibrowarrior #healing #wellness #chronicstyle #grateful #inspiration #affirmations #enlightenment #iam #spoonie #meditation #enlightenment
Please join us for our first ever #gne Myopathy (HIBM) Patient Day in  #philadelphia, a fact filled event including up-to-the-minute information, presentations from scientists and industry professionals (including the #nih) with sessions for patients, caregivers, scientists, and physicians. Continental breakfast, lunch and a closing reception will be provided for all attendees. Visit our website, or DM us for more info. #gnem #hibm
Today is the Aplastic Anaemia Day and begins our second week of our spring awareness raising campaign. We will be sharing facts about AA and the AAT and encouraging you to support our charity in whatever ways you can: by fundraising, donating, sharing our posts, signing up for the Windsor Great Park Walk (you can do so via our website). #aplasticaneamia #aplasticanaemiaawareness #raredisease #rarediseaseawareness #rarereality #rarebonemarrowfailure #bonemarrowfailure #aplasticanaemiatrust
On Aplastic Anaemia Day, Phil explores what it's like to go back to work following a bone marrow transplant.  #aplasticaneamia #aplasticanaemiaawareness #raredisease #rarediseaseawareness #rarereality #rarebonemarrowfailure #bonemarrowfailure #aplasticanaemiatrust
‘Not just rare, undiagnosed rare.’ Some rare conditions are so rare they may remain undiagnosed. Help illuminate the #rarereality by visiting raredisease.org.uk/reality
“...I am four years old and I was diagnosed at eighteen months with Niemann-Pick type C...” Holly Chandler (age 4, NP-C)  #rarereality #rarediseaseuk #geneticallianceuk #niemannpicktypec
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©📙
Community || The Rare Disease Day 2019 celebrations continued at San Jose's First Annual Walk for Rare Diseases this morning! We loved the opportunity to support @gsnorcal in their mission to raise awareness about rare disease.
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
Spent an interesting few days here this week finding out about alternative therapies for my #lupus and #itp 😊 I'm always amazed at how our bodies work and how much it can affect your mental health when they don't. Lots of things to think about and achieveable goals to set! #lupusawareness #itpawareness #rarereality #rarediseaseawareness @itpsupportassoc @lupus_uk #picoftheday #nofilter #gartnavalhospital #nhs
If you have not yet registered for our March Patient HUDDLE there is still time. Tomorrow, we will be discussing Assistive Technology & Self Esteem. Please join us for this confidential, virtual conversation for patients, led by patients. https://bit.ly/2EG5c7W #curehibm #gnemyopathy #raredisease #rarereality #gnem
The final blog this week as part of our spring awareness raising campaign 'I'm Fantastic Not Aplastic' celebrates the incredible resilience shown by Ros, who's carrying on with exercise whilst undergoing treatment for AA. What an inspiration!  #raredisease #rarediseaseawareness #rarereality #aplasticanaemiatrust #aplasticaneamia #aplasticanaemiaawareness #rarebonemarrowfailure #bonemarrowfailure
‘I want my condition to be understood for the future of other generations.’ Join Stephen and illuminate the #rarereality at raredisease.org.uk/reality
Brilliant to mix with the Cambridge Rare Disease Network folks at the School of Clinical Medicine at Addenbrooke’s, Cambridge last night. Excellent content - improving patient care, imaging in rare disease diagnosis and much more #rarediseaseday #rarereality #aplasticanemia #aplasticanaemia #rarebonemarrowfailure #nihrbioresource #camraredisease
#rareillnessawareness was yesterday and it highlights what #ourhenry is currently fighting. Aplastic Anaemia. You can read his blog via our #linkinbio .  Repost @aplasticanaemiatrust with @repostsaveapp · · ·  Today is Rare Disease Day and the 4th day of our spring awareness campaign "I'm Fantastic Not Aplastic". In this blog Harry shares his insights of what's it really like to pause pursuit of sports following his AA diagnosis.  #rarereality #raredisease #rarediseaseawareness #rarediseaseday2019  #aplasticanaemia #aplasticanaemiaawareness #aplasticanaemiatrust #bonemarrowfailure #rarebonemarrowfailure
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
Reposted from @lukes_dad78 -  Today is rare disease Day! #raredisease #rarediseaseday #rarereality #supportluke #share #copyandshareittoyourfriends 🤝 - #regrann
It's important to us share about NF and spread awareness every day but today, #rarediseaseday, it is particularly important to remember that behind every diagnosis and every statistic is a person (and their family and friends) hoping for treatments and a cure. We are so fortunate to have come in to contact with everyone we have in the NF community and blessed to have been able to meet people who have other types of rare diseases and helped raise our own awareness. ❤💚💙 #endnf #rarediseaseday #shareyourrare #rarereality #endnf #iknowafighter #benignisnotfine #nfwarrior #showyourrare #neurofibromatosis #nf1awareness #bornafighter #myathenfwarrior #myasnfwarriors #rareshouldntmeanunknown #beautymarknation
It's rare disease day! I don't talk about it much but I'm a part of the world's population that has a rare disease. How rare? Well.... "Truncus arteriosus is a rare, congenital heart defect that affects males and females in equal numbers. This disorder occurs in approximately 1 in 33,000 births in the United States. It is estimated that truncus arteriosus accounts for about 1 in 200 congenital heart defects." I added a lot more information in my story so if you all are curious about anything, feel free to ask 💕 #rarediseaseday #congenitalheartdefect #rarereality #happyheartsclub #heartwarrior #youcareaboutsomeonerare #rarediseaseday2019 #health #medicalissues #chronicillness #aboutme #adultsskatetoo #jacksonfigureskates #johnwilsonblades
Today is World Rare Disease Day. Julian was diagnosed with a rare disorder called, Dyskeratosis Congenita (DC). DC affects 1 in 1 million people. There’s not a lot of research and treatment for patients who suffer from this. This is why awareness is so crucial. . . Many see Julian and say he doesn’t look sick. Newsflash to those people, he is sick and needs help. Julian attends school but it wasn’t an easy choice. It wasn’t easy at all. When he first started school I would cry thinking about everything that could go wrong. I would wait in the parking lot for hours just Incase the office would call me. Plus the school is an hour away from us 😬 . . The people in the collage is the reason why he is able to attend school. The entire school loves Julian. They know about Julian’s medical condition. I feel at peace sending him to school knowing that they love him just as much as we do. They look after him and are so loving. . . Julian being able to go to school and socialize has helped him emotionally, physically and mentally. School is his therapy. This is the reason he fights hard. He loves his friends and parents that attends the school. Thank you all for the unconditional support and love you show our baby. It’s because of you all he fights strong. A lot of people ask us how we do it? Support system is how. The school is an hour away but I wouldn’t go anywhere else. That hour is totally worth it! . Check out their Genes Ribbons 💚. Supporting Rare Disease Day and proud for Julian. . . @globalgenes #rarediseaseday #rarereality #rarediseaseday2019 #worldrarediseaseday #dyskeratosiscongenita #careaboutrare #wrdd2019  #miami #southflorida #latinogang #somosunavoz #unityindiversity #viral #bethechange #bethematch #swabtosave #bethechange #awareness #careaboutrare #hope #fightlikeakid #strong #movement #joinforces #globalgenes
@nord_rare @rarediseaseuk  @rareconnect @rare_advocates @eurordis  I am a patient advocate for Kallmann Syndrome. I enjoy and appreciate the chance I have to interact with fellow patients; it helps me as much as I hope it helps fellow patients. #rarediseaseday #rarereality #kallmannsyndrome
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 @mps_superhero with @make_repost ・・・ ::Music Video LINK in Bio::🎼🎬 🎧 In honor of #rarediseaseday, we are sharing this video to show a glimpse of a father’s point of view about his first born son, the devastating news, and their challenging mission with a #raredisease. No matter what life brings, daddy will always be by his side… especially as he fights to save his life.  #mpssuperhero #mpsii #mps2 #huntersyndrome #showyourrare #mps #rare #donation #foundation #life #volunteer #money #wrdd2019 #teamworkmakesthedreamwork  #community #kids #children #boys #father #son #love #live #smile #share #careaboutrare #rarereality
Today is #rarediseaseday ! I felt like it would be important to talk about two of my lesser known conditions. As most of you know , I live with #mecfs , #eds and #mcad. • First one is #cyclicalvomitingsyndrome , a believed metabolic condition that causes intense bouts of nausea and vomiting , lasting 4-10 days. A few factors are associated with the cause ; problems between your nerve signals , hormonal system disregulated or unable to cope with stress hormones and certain genes. CVS can be induced by a different number of environmental and hormonal factors , and usually causes some malnutrition by the end of the cycle. When unmanaged , there can be four phases - the prodome phase , where you feel a CVS attack incoming , the vomiting phase 🤢, recovery and the well phase which is the time between CVS attacks. • What makes #cvs scary is that it can lead to an #mcas attack.  #mastcellactivationsyndrome causes in most cases for Mast Cells (a type of blood cell) to react negatively and releasing histamines.  Different factors include food , fragrances , exercise and chemicals. Vomiting is of course another 😂 I started developing allergies to absolutely everything in the past few years , gaining sensitivity to more foods and fragrances. I hate to be that girl but please don’t bathe in Chanel! 🤦🏻‍♀️ • What are you advocating for on #raredisease Day? #showyourrare • Video of me struggling to walk during a flare at the vets. Showing you the real struggle some days 💪 . . . . .  #spoonie #chronicillness #chronicpain #invisibleillness #disability #disabled #butyoudontlooksick #chronicallycute #chronicallyill #spoonieblogger #canadianblogger #halifaxblogger #fibromyalgia #rarediseaseday2019 #ehlersdanlos #pride #rarereality #hypermobile #zebrastrong #dysautonomia
#repost credit to @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 #thor #loki #wintersoldier #buckybarnes #tomhiddleston #markruffalo  #captainamerica #mcu #marvel  #steverogers #chrisevans #valkyrie #infinitywar #teamcap #thorragnarok #captainamericacivilwar  #ironman #blackpanther #blackwidow
Today is #rarediseaseawareness day 2019!  It is important that these life debilitating and often life threatening, diseases are highlighted, as without awareness there is little chance of ever finding cures or modern treatment options. . I have four rare diseases (forgot Gastroparesis and reynauds 🙈) and have a history of a fifth which impacted a chunk of my life after having my second child.  These diseases were missed for a long a time due to medical professionals looking for a rational explanation for my symptoms rather than looking for more rare causes. Even after a diagnosis, lack of knowledge has caused my disease to get so extreme, almost every organ in my body has either failed or developed impaired function causing my life expectancy to have been decreased quite dramatically.  Even today, 9 times out of 10, when I mention the names of any of these diseases, medical professionals have either never heard of them or know little about them and this is so risky in life threatening diseases such as EDS. . Due to this, I have become my own advocate over the years to ensure my own safety as have several other patients with such rare conditions. . I only hope that things will change in the future and our now rare diseases will be well known and better treated or even cured 🖤🦓
Any parent or carer of a child or adult with Rett Syndrome knows all too well the complexities of all the health care services which they have to navigate to keep that person well.  Trying to understand all the different specialists the patient might have access to and how they all relate to each other can be confusing.  It can also be difficult to articulate to services, from a social care perspective in particular, how much work is involved in co-ordinating medical care, appointments and services for the person you care for.  Reverse Rett have been working for a number of years to improve UK clinical provision for people with Rett Syndrome and to enable UK access to emerging treatments. To this end, one of our on-going tasks has been to map current clinical provision for both adults and children with Rett.  Today, on #rarediseaseday, this is something that we want to share with families and professionals working with people with Rett Syndrome.  These flowcharts are working documents and suggested edits or additions are welcome. Just for today, we think it is enough that parents and carers have the opportunity to look at all the work they do on behalf of the person they care for, in print.  #reverserett #rarereality #makingchangehappen for children and adults with #rettsyndrome #showyourrare  If you would like to download a PDF please go to the following link:  https://www.reverserett.org.uk/mapping-clinical-provision-for-children-and-adults-with-rett-syndrome-in-the-uk/
Today is #rarediseaseday 🦓Despite the label, overall, rare diseases are not always so rare, but instead often underdiagnosed and poorly recognized. At least 1 in 10 Americans has a rare disease with even more people with rare diseases living around the world.  In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. The European Union considers rare diseases to be those that impact fewer than 1 in 2000 individuals. There are over 7,000 identified rare diseases, and new diseases are discovered every year which impact a wide variety of body systems. Increasing #awareness of all conditions and keeping an open mind as a practitioner can help all those who deserve and need recognition, #support and treatment get the care and respect they deserve.  Let me know below how you are recognizing #raredisease so I can share how you  #showyourstripes,  #nord @rarediseases @dysautonomiaintl @edsawareness_official @edswellness @ehlers.danlos @ehlersdanlosuk
There are around 66.85 MILLION people in the U.K.  and only around 1,000 of those have Behçets. I am 1 in that thousand. Which means I am the 0.001% of the U.K. population officially diagnosed with Behçets.  I am rare.  And this is 10 photos that sum up my #rarereality (I was going to write a really long emotional post and I just ended up sobbing 🙃✌🏻) #rarediseaseday
There are around 66.85 MILLION people in the U.K.  and only around 1,000 of those have Behçets. I am 1 in that thousand. Which means I am the 0.001% of the U.K. population officially diagnosed with Behçets.  I am rare.  And this is 10 photos that sum up my #rarereality (I was going to write a really long emotional post and I just ended up sobbing 🙃✌🏻) #rarediseaseday
Today is National #rarediseaseday  Did you know that there are over 6000 rare conditions which affect over 300 million people worldwide? This means that 1 in 20 people will be diagnosed with a rare condition or disease in their lifetime.  While Alex’s #vacterl diagnosis is not a disease, it is an extremely rare condition, affecting only 1 in 40,000 babies.  We share his story to bring awareness to the condition he lives with in the hopes of building empathy and understanding. Awareness helps to create acceptance and build allies.  And while this last year has been both unexpected and difficult; with doctor appointments, procedures and surgeries, we truly feel Alex was brought to us for a reason and was #createdtomakeadifference  #shareyourrare #rarewarrior #vacterlbaby #vacterlassociation #vacterlwarrior #advocate #advocatelikeamother #rarediseaseday2019 #rarereality #showyoucare #ilovesomeonerare #wrdd19
Today is #rarediseaseday  Did you know that 1 in 200,000 Americans are affected by a rare disease or that 80% of these diseases have genetic origins?  We are proud to invest in Genomenon, a Michigan startup focused on improving the quality of life for those affected by these conditions. Check out the link in our bio to learn more about their work!
Beautifully rare and incredible with it! Living day in and day out with kidney disease since the day after her second birthday... #rarereality #showyourrare #rarediseaseday #kidneydisease #nephroticsyndrome #fsgs
Why I care about rare? Because I am rare! #wrdd2019 #careaboutrare @globalgenes @swabtosave #savejulian #dcnation #rarereality #rarediseaseday2019
#repost @mps_superhero with @make_repost ・・・ ::Music Video LINK in Bio::🎼🎬 🎧 In honor of #rarediseaseday, we are sharing this video to show a glimpse of a father’s point of view about his first born son, the devastating news, and their challenging mission with a #raredisease. No matter what life brings, daddy will always be by his side… especially as he fights to save his life.  #mpssuperhero #mpsii #mps2 #huntersyndrome #showyourrare #mps #rare #donation #foundation #life #volunteer #money #wrdd2019 #teamworkmakesthedreamwork  #community #kids #children #boys #father #son #love #live #smile #share #careaboutrare #rarereality
Esuberante, scoppiettante,autonomo e super socievole. Se cercate un animatore per una festa, beh, Edoardo è quello giusto ! E vi assicuro che verrete travolti da una esplosione di vitalità senza uguali! Oggi è una giornata particolare, la giornata mondiale delle malattie rare. Beh, Edo ne ha una, ha la sindrome di poland. Quello che mi auguro per lui è che riesca sempre a vedere queste sue caratteristiche fisiche legate alla sindrome come peculiarità che lo rendono ancora più speciale e fantastico .. perché lui è proprio questo per noi: unico ed inimitabile ! La più grande gioia che poteva capitare nella nostra vita !☀️☀️☀️☀️☀️☀️ #polandsyndrome #sindromedipoland #malattierare #luckyfinproject #luckyfinrock #zanzibar #zanzibarbeach #familygoals #travelwithkids #travelwithlove #travelphotography #tanzania #igerszanzibar #visitzanzibar #luxuryresort #africa #afrique #aisp #syndactyly #visitzanzibar #zanzibarisland #rarediseaseday #rarediseases #rarereality #dolcepedagogia
Today is Rare Disease Day and the 4th day of our spring awareness campaign "I'm Fantastic Not Aplastic". In this blog Harry shares his insights of what's it really like to pause pursuit of sports following his AA diagnosis.  #rarereality #raredisease #rarediseaseawareness #rarediseaseday2019  #aplasticanaemia #aplasticanaemiaawareness #aplasticanaemiatrust #bonemarrowfailure #rarebonemarrowfailure
Rare diseases affect approximately 30 million people in the European Union and at present, there are 3.5 million people who are affected by a rare disease in the United Kingdom alone.  Over 1000 rare skin diseases are known, many of which are of genetic origin and manifest in childhood. Despite the scale of the issue, a significant proportion of these patients do not have access to the right care and treatment. So join us to spread awareness to stand against our fight with rare disease.  With awareness comes a cure for these incredible people.  #rarediseaseday2019 #raredisease #rarereality #genetic #undiagnosed #awareness #rareillness #stayhealthy #livehealthy #healthcare #healthy #healthylife #uk #lifestyle #tips #care #disease #care #healthandfitness #stayfit #teddingtonpharmacy
It’s Rare Disease Day!  Although it’s amazing that there is an entire day dedicated to raising awareness, remember that for those who are struggling with debilitating, chronic conditions, this is their reality every day.  Today, I raise awareness (just as I do every day) because there are those struggling to get the diagnoses I had to fight so hard to get.  Today, I raise awareness because I hope that one day the only solution to my illness isn’t symptom management.  Today, I raise awareness because I need to fight for a better quality of life.  Why do you raise awareness?  #rarediseaseday #rarediseaseday #showyourrare #raredisease #rarediseaseday2019 #rare #showyourrare #rarediseaseawareness #disability #awareness #raredisease #rarereality #showyourstripes #rarediseases #chronicillness #awarness #rarediseaseday2019 #showyourstripes #rarediseaseday #invisibleillness #butyoudontlooksick #spoonielife #chronicillnesswarrior #dislokate #ehlersdanlos #ehlersdanlossyndrome #dislokate #zebrastrong
Rare Disease Day 2019. Leaving a legacy gift. http://blog.raynaudsscleroderma.co.uk/2019/02/rare-disease-day-2019-bridging-health.html?spref=fb&m=1  #sclerodermafreeworld #raynaudsfreeworld #research #autoimmune #rarediseaseday #raredisease #scleroderma #raynauds #rarereality #showyourrare
#repost @mps_superhero with @make_repost ・・・ ::Music Video LINK in Bio::🎼🎬 🎧 In honor of #rarediseaseday, we are sharing this video to show a glimpse of a father’s point of view about his first born son, the devastating news, and their challenging mission with a #raredisease. No matter what life brings, daddy will always be by his side… especially as he fights to save his life.  #mpssuperhero #mpsii #mps2 #huntersyndrome #showyourrare #mps #rare #donation #foundation #life #volunteer #money #wrdd2019 #teamworkmakesthedreamwork  #community #kids #children #boys #father #son #love #live #smile #share #careaboutrare #rarereality #share #repost
Outcome || WOW! Thank you so much for all of the support that you have shown Little Zebra Fund over the past 12 days during this fundraising campaign. We met our goal – thanks to receiving the monetary equivalent of 280 donations of $28 on or before February 28!⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Our sights are set on reaching at least $10,000 total in donations by the end of day, in order to receive the maximal donor matching gift! Right now, we are at $9,000. Help us get there! Head to our website (link in bio) to donate! ⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ 🦓⠀⠀⠀⠀⠀⠀⠀⠀⠀ Happy Rare Disease Day! Happy launch of Little Zebra Fund day!
Posted @withrepost • @mps_superhero ::Link in Bio:: In honor of #rarediseaseday, we are sharing this video to show a glimpse of a father’s point of view about his first born son, the devastating news, and their challenging mission with a #raredisease. No matter what life brings, daddy will always be by his side… especially as he fights to save his life.  #mpssuperhero #mpsii #mps2 #huntersyndrome #showyourrare #mps #rare #donation #foundation #life #volunteer #money #wrdd2019 #teamworkmakesthedreamwork  #community #sponsors #donors #kids #children #boys #father #son #love #live #smile #share #careaboutrare #rarereality
From the #rairda report "Reduce, Improve, Empower": nearly half of all patients with a rare autoimmune rheumatic condition like scleroderma wait more than three years for a diagnosis. This needs to change!  #rarediseaseday #rarereality #showyourrare #showyoucare #raretogether #careforrare
::Music Video LINK in Bio::🎼🎬 🎧 In honor of #rarediseaseday, we are sharing this video to show a glimpse of a father’s point of view about his first born son, the devastating news, and their challenging mission with a #raredisease. No matter what life brings, daddy will always be by his side… especially as he fights to save his life.  #mpssuperhero #mpsii #mps2 #huntersyndrome #showyourrare #mps #rare #donation #foundation #life #volunteer #money #wrdd2019 #teamworkmakesthedreamwork  #community #sponsors #donors #kids #children #boys #father #son #love #live #smile #share #careaboutrare #rarereality
Today is Rare Disease Day 2019! Macs’ condition is called GRIN2a and is so super rare we’ve never met another child like him!  If you google the condition firstly hardly anything comes up 😂 and secondly you’ll notice it states ‘epilepsy and communication difficulties’ as symptoms.  Unfortunately Macs has a lot more health issues to contend with than just these: severe reflux, breathing difficulties, severe uncontrollable vomiting, cortical visual impairment and is unable to walk, sit, hold his head up or use his arms, legs, hands or feet in a meaningful way (relies on a wheelchair). We’ve yet to meet another child (online) with his condition that has all the same issues as him.  It makes treating his different issues quite difficult as there are no tried and tested cases that have gone before him. Macs ‘ loves to play and is always happy when he’s feeling well.  He loves to play with his big brother and loves all things Pokemon 😀  #rarediseaseday2019 #rarediseaseuk #raredisease #grin2a #livingwithraredisease #imunique #love #educate #health #instahealth #medical #rarereality #ourlife
It's #rarediseaseday ! Pretending the bag is #ehlersdanlossyndrome and the injections I need in my face and hip to eat and walk soon 😑 14/10 can recommend as #therapy 😂 just glad there are no pics showing me 10 seconds later lying on the floor 😅  #rarereality #karate #karatekick #bagwork #training #trainhardfighteasy #frustrationface #ithurtsbutitworks @ehlersdanlosuk
Happy Rare Disease Day!!! I feel blessed to be a part of such a hard working and passionate group of amazing humans 💖 @rarediseaseuk @geneticallianceuk @swanchildrenuk @ataxia_and_me  #rarediseaseday #raredisease #undiagnosed #1in17 #health #future #happiness #nhs #funding #research #rarereality #zebra #disability #chronicillness #invisabledisability
Un día muy importante para resaltar a esa comunidad con una variedad de enfermedades y condiciones únicas, cuya atención, prevención y tratamiento debe tomarse a tiempo, apoyando asi a las redes que suministran esos servicios, generando conciencia sobre estos padecimientos y a los afligidos por ellas🤚⚕️ #diadelasenfermedadesraras #salud #rarereality
Today is Rare Dissease Day 2019. Please watch the video. https://youtu.be/a-jXa5yzRNc ••• #rarereality #shareyourrare #showyoucare #raredisseaday #gomadforrohhad #missionfindacure #rohhadawareness #robertdowneyjr #rdj #teamdowney #teamstark #avengersendgame #endgame @robertdowneyjr @rohhad_association_charity @jimmy_rich @mo_freek
After many years, searching for answers about our sons health was challenging. At age 3, Julian was diagnosed with rare disorder called, Dyskeratosis congenital (DC). . . DC is a rare disorder and 1 in 1 million people are affected by it. DC also affects many parts fo the body and cause life threatening problems. There’s very little research about this illness. Meaning treatment and answers for us suffering aren’t always there. . . Rare disorders don’t get the acknowledgement that they should. Many patients and families come together to educate and bring awareness. We make sure we take advantage of every possibility. . . Genetics have a lot to do with rare disorders and ancestry has a lot to do with genetics. If you’re planning for a family make sure you take out that piece of paper and pencil, start drawing your family tree. . . #rarediseaseday #rarediseaseday2019 #wrdd2019 #careaboutrare #miami #southflorida #bethechange #unityindiversity #youngvoices #youngvoices2019 #awareness #rarereality #viral #southbeach #southflorida #fightlikeakid #strong #brave #dyskeratosiscongenita

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