#raredisorder

[otaviogilbert]

How One Woman Found Success With Medical Marijuana | Dr. Partha Nandi

Do you know someone who is struggling with a rare disorder? Josey Scoggin, a medical marijuana patient and activist, is living proof that medical marijuana can help people thrive in the face of complex disorders. Despite being told she would be paralyzed by 18, she persevered and found success. If you are struggling with an autoimmune disorder, listen to Josie's story and learn how medical marijuana can help you cope and live a full life.

[ezswallow]

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Best Pill Crusher - Ez-swallow USA 

The EZ Swallow Pill Crusher crush pills into a fine Powder. There is a built in storage compartment plus a Drinking cup for on the go convenience.

[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

[giazillashow]

@mattconnarton is back. Blunt Force will Air tonight "Head Shrinker" 8 PM PST Ipmnation.com/live1 A Stanford #psychiatrists discusses #chronicillness #chronicpain #patientsafetyfirst #patientexperience #suicidedue2pain #suicideprevention #raredisorder #medicalptsd #medicaltrauma with me, after unqualified #er #doctor refused relief and sicced #psychiatry #behavioralhealth on me. #descrimination #cdcguidelines #opioidhysteria #opioid #patientsnotaddicts #patientsnotcriminals Please listen, share, participate!! https://www.instagram.com/p/B1ov5kkHhRB/?igshid=19h5j6fqlv1k2

[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

[unutterableme-blog]

(1) I am a snowflake - not because I'm special or unique but because I have Myasthenia gravis. Connection? It's also called as the Snowflake Disease. Photo by: Julia Freeman-Woolpert #MG #MyastheniaGravis #ihaveheardofmg #chronicillness #autoimmunedisease #invisibledisability #invisiblepain #snowflake #muscledisease #muscledisorder #neuromusculardisease #neuromusculardisorder #raredisease #raredisorder #muscleweakeningdisease #muscleweakness

[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

[theglittergirlnikki]

"But you don't look sick." How many times have you heard this phrase?  If you fight and invisible illness you've heard it way to often. Many if the issues we deal with do not have any outward signs but we aren't crazy. We have legitimate, diagnosed illnesses that can sometimes be debilatating. The stigma and bullying needs to stop. Educating yourself is the best way to understand these rare invisible illnesses. We aren't hypochondriacs we are warriors. Take a look at the illnesses that are dear to us: @sandy_b._--Hemophila @age_and_makeup-- Alzheimer's @missing46--Rare Disease Day @theglittergirl.nikki--Type I Diabetes and PTSD/TBI @emilythubbron--Factor V Leiden @ramirezfinezmakeup--Fibromyalgia @gailmarie_mua--Fibromyalgia @amberillo213--Hydrocephalus @nikkola_elise--Rheumatoid Athritis @brennamae931--DDD @nativebombshellmua---Chiari @art_by_ariana--Gastroparesis @shannonssmile--Lewy Body Dementia Thank you for participating to make this collab a success. If you would like to be part of this amazing group, please DM @emilythubbron #invisibleillnesses #raredisorders #hemophila #factorvleiden #hydrocephalus #alzheimers #rhematoidarthritis #degenerativediscdisease #gastroparesis #chiari #lewybodydementia #fibromyalgia #ptsd #tbi #type1diabetes #collabs #emscollabs #collabsnotcompetition https://www.instagram.com/p/BubvYLEhTEC/?utm_source=ig_tumblr_share&igshid=iox7hicwodqx

[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

[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

[tdennis3333]

please stop telling parents of special-needs children that they are chosen or special Why? just in the last week when we spent a week in Tennessee at the Special Olympics we must have heard this comment over 20 times. A study done on mothers of children with intellectual disabilities or autism found that we are 40% more likely to die of cancer; 150% more likely to die of cardiovascular disease and nearly 200% more likely to die from misadventure (a category that includes accident, suicide, and homicide) than other mothers. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0113430 This study did not even consider those who have a child with significant lifelong physical disabilities. And even if we are fortunate enough to escape the chronic disease risks of the SN life, we still have far higher rates of depression, anxiety disorders and PTSD than mothers of typically developing children. Perhaps our premature death or psychiatric problems are still considered acceptable struggles within the realm of ‘Gods plan’. Theological views aside though, trying to calm someone down with platitudes dismisses their experience of hardship and diminishes the actual support being given. It dismisses the shattering of a mother’s heart when she hears her child’s diagnosis for the first time. It minimizes the agony of a mother who wakes every hour of the night to soothe a child whose brain won’t allow them to sleep. It ignores the wounds inflicted on a father watching his child being drugged and then resuscitated in the triage bay after another uncontrolled seizure. It overlooks the physical toll that caregiving takes on the body and the hopelessness that clouds the mind when exhaustion takes hold. The truth is, a lot of days, it really doesn’t feel like we’re handling it at all. #specialneedsparenting #specialneedsparentstruggle #ptsd #raredisease #raredisorder #braininjury #Schizencephaly #lissencephaly #anacephaly #polymicrogyria #inclusion https://www.instagram.com/p/B8L6W4ZJM9_/?igshid=1gq80fieo3vcn

[deafgaming]

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