#RareDisorders

[riomed2]

Albinism is a rare genetic disorder where the body produces little to no melanin. Melanin is a chemical that is responsible for the pigmentation (colour) of the skin, hair, and eyes. Melanin is also involved in the development and functioning of the eyes and as a result, people with albinism may have vision problems.  

[connectedmindssocial]

When reality feels unreal—Alice in Wonderland Syndrome alters perception in ways most can’t imagine. Raising awareness can make a difference. 

[vikashkumar7544]

🔬 Your Body Is Tired for a Reason...

Mitochondrial Disease is what happens when your cells run out of fuel. Think beyond just “fatigue”—we’re talking seizures, hearing loss, and stroke-like episodes.

🌌 It’s one of the most mysterious, multi-system disorders out there—and it affects thousands silently.

📖 Read now: https://revisiontown.com/mitochondrial-disease-causes-symptoms-treatment-guide/

[patriciabooks]

The human mind is as fascinating as it is mysterious, and Patricia Lubeck’s Top 12 Rarest Mental Disorders: Behind the Asylum Walls takes you on a chilling journey through its most peculiar corners. From boanthropy, where individuals believe they are cows…

[amishamaree]

She’ll always be my hype man!! No wonder she wants to be a Dj 🤣

@billieeilish

[wholecarenetwork]

Caregiver Spotlight - Kerry Hughes (Ep #61)

[tanmansmom2010-blog]

We are #CCDS Super Hero's! #ccdsday2019 #ACD #epilepsy#love#boymom#love#theellenshow#raredisorders#NINDS#1yearseizurefree#god#blessed#hustle#live#love#laugh#raiseawareness#heartandsoul (at Menominee, Michigan) https://www.instagram.com/p/BtXfuoBHRhB/?utm_source=ig_tumblr_share&igshid=13p1bf5jm8j2f

[zebrapotsie]

Today is Rare Disease Day! "No other disease in the history of modern medicine, has been neglected in such a way as Ehler’s Danlos Syndrome” Professor Rodney Grahame EDS is a group of connective tissue disorders, our collagen is defective. Collagen is a major component of the human body. This causes a wide variety of multi-systematic symptoms. EDS is incredibly hard to diagnosis and not widely known. It is extremely hard to for doctors who are not educated in EDS to put together symptoms like constant nausea, dislocations/subluxations, hyper-mobility and easy bruising (just to name a few). Because of this, EDS is considered a rare and under-diagnosed. We are not rare, just rarely know. Dysautonomia is a umbrella term dysfunction of the autonomic nervous system. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. I have a form of Dysautonomia called Postural Orthostatic Tachycardia Syndrome. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside. “It’s like when you run a marathon, and you’re sore for the next couple days, but that feeling never. Goes. Away. You rest, it still hurts. You work out more, it still hurts. You take pain medicine, it still hurts. You change your diet, it still hurts. You do every possible thing you can think of, it still hurts. But then you have to pretend like you’re fine otherwise you get ridiculed which just makes everything worse.”

[kingofsinghs]

Day 1.. Rex Karmaveer Awards #mksdilse #lifecoach #Motivationalspeaker #powerinme #ruhemohabbat #RexKarmaveer #RexIdeasForAction #noida #SDG #socialcause #socialimpact #hemophilia #raredisorders #rarediseases #delhi #jaipur #mumbai #singrauli #waidhan #synchronicity (at Sector 50) https://www.instagram.com/p/B5SxanOn8N7/?igshid=7af3uswu2a0o

[craniofacialvegan]

Here's the start of a new album for 2017 craniofacial events. The majority of the annual wonder picnic pictures were taken by photographer and my dearest friend/cranio mom Shawna Sanders! I love you guys!

The event was once again nevertheless amazing, and there were three incredibly resilient cranio children in attendance, Sophie, Jordan and Shane. We all share craniofacial conditions too; Pfeiffer Syndrome, Crouzon Syndrome and Treacher Collins Syndrome.

I have respect for all of these mothers who are all incredibly supportive and selfless for giving their children all that they have. Support is something I didn't have growing up. These events are vitally important. In the long run, the interactive involvement in such gatherings will have such a great impact on these cranio warriors!

We're all sitting in the middle of the heart, which I must say came out beautifully radiant! Thank you to school teacher Kim McGrorty Naiman and everyone who contributed to this wonderful event! ❤

#pfeiffersyndrome #craniofacial #treachercollins #crouzon #microtia #atresia #disability #awareness #specialneeds #craniomom #differences #hearing #antibullying #friendship #kindness #love #acceptance #moms #cranio #bullying #diversity #raredisorders #birthdefect

[deafgaming]

I would have a flare up on #RareDiseaseDay... need good vibes y’all ;-;

[pathologylab]

#MarfanSyndrome: A genetic disorder which affects the connective tissue (present all over the body) & various organs in the body. Mutation in the #FBN1gene can lead to this syndrome & is inheritable but not everyone with mutation in this gene will develop disease.

Signs & symptoms include: Disproportionate long arms, legs & fingers, curved spine, heart murmurs, dental & bone problems, changes in the blood vessels, heart defects and many more.

Marfan syndrome diagnosis can be difficult as many other disorders overlap with it. With strong family history, Marfan syndrome can be confirmed or ruled out with Genetic testing. Many of the mild cases go undiagnosed due to lack of awareness about the disease.

#marfanawareness #raredisorder #healthcare #testing #health #genetictesting #genetics

Connect Today - #GENES2ME

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[tdennis3333]

We are excited to announce that #wearerare has chosen a 2020 #Schizencephaly Grant recipient and the family has chosen a freedom jogger stroller for their child. Each year one family is chosen for the two programs available. Our family was chosen on Schizencephaly Awareness day. Although we are rare works with all rare conditions and helps with legal proclamations, research and educationfor rare conditions across the globe we are committed to the continued research and education specifically for Schizencephaly. #raregiveback is a program that is specific to the disorder Schizencephaly. It is the inspiration In which this Foundation was built. Congratulations to our newest family on your way to #inclusion and #mobility We cannot wait to share photos of your journey. #SchizencephalyAwarenessDay #schizencephalyawareness #raredisorder https://www.instagram.com/p/CAcssjVhhdf/?igshid=1fcgjmg2f4fai

[dodapper]

#mystory #memories #2010 #personalhistory #xray #spine #spinalcordinjury #spinalfusion #surgery #titanium #Wolverine #medicalmarvel #modernmedicine #JohnHopkins #MiltonHershey #PennState #painmanagement #DrArmstrong #orthopedics #correctivesurgery #raredisease #raredisorder #tetheredcordsyndrome (at Milton S. Hershey Medical Center) https://www.instagram.com/p/CCRqvFMH252/?igshid=b58j8iht6v5x

[ohsuchislife-blog]

What does mdds feel like for me?

Its been about 2 months i have been suffering from mdds. The rocking swaying bobbing pulling pushing fatigue headaches nauseated feelings triggered after a very rocky 45minute speed boat ride. It was meant to be our last beach trip in south east asia. It might as well have been our last boat trip ever for me! Anyway, I can't complain much as i have read extensive blogs, articles and interviews where some people suffered for years. I can barely stand it for a day, let alone YEARS!!!!! I am still trying to cope this debilitating syndrome. This space will detail my mdds symptoms and how i cope with it!

[zebrapotsie]

Rare Disease Day is this coming Tuesday (February 28th) - With awareness comes hope and with knowledge comes power.