Lemon @lemon_patch
EDS/Alpha-tryptasemia/MCAS/POTS/PID mother to two affected boys. my "lemons." facebook.com/laine.plotkin Charlotte, NC Joined July 2016-
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Food additives have been used for thousands of years, while recently there are more natural and artificial substances than ever before. This poses an interesting question: Are #dyes, #sulfites and other #foodadditives responsible for allergic reactions? rlm.ag/2bXSOy
When you are on antibiotics (regardless of reason/type) you double HC for the full duration AND the extra double 4am dose. e.g. if normal were 10-5-5 at 7a, 11a, 4p, then during the ABX you’d take 20mg at 4a, 20mg at 7a, 10mg at 11a and then 10mg at 4p. #TogetherWeAreAIStrong
Hurricane #Florence is producing a life-threatening storm surge and hurricane conditions over portions of eastern North Carolina. The threat of freshwater flooding will increase and spread inland over the next several days. hurricanes.gov
All adrenal insufficient patients, are you in Florence path and evacuating, make sure you pack extra meds www.nadf us
Evidence indicates that eosinophilic esophagitis is an allergic disorder. Spergel and Aceves discuss allergens in EoE and the importance of EoE treatments that account for atopy in patients with both EoE and other allergic diseases. bit.ly/2KTJcLg
NCCIH’s brand-new app, HerbList™, is now available for both iOS and Android. HerbList™ is an easy-to-use resource that gives you research-based information on more than 50 herbs that people use for health purposes. Download #HerbList today! bit.ly/2MlaFmu
Retweet: Studying #rarediseases has led to increased understanding of the body's biochemical pathways & to major breakthroughs in discovering how our genes interact with other factors to cause disease. Learn more: rarediseases.org/5-myths #5OrphanDrugMyths
WEBINAR RECORDING AVAILABLE A recording of the lecture, "Differential Diagnosis of Headaches in the EDS Population" with Dr. Frasier Henderson is now available! Recordings are also available for all previous webinars in the Living with EDS/HSD series. ow.ly/dbn430kkS7a
A simple vitamin cocktail to treat #sepsis has shaken up the medical world: ms.spr.ly/6016r2AIQ
Correlation of alpha- and beta-specific tryptase gene expression with TPSAB1 and TPSB2 genotypes in humans jimmunol.org/content/198/1_…
Targeting B Cells and Plasma Cells in Autoimmune Diseases frontiersin.org/article/10.338…
White matter abnormalities are also repeatedly present in patients with systemic mast cell activation syndrome mastopedia.wordpress.com/2018/05/28/whi…
Thank you EndocrineWeb for writing about Addison's disease
The sisterhood of mothers w/ medically fragile children stands united, knowing kids deserve the best resources, services & care ow.ly/OYph30k23qY "Our relationships are forged in online support groups, through non-profit organizations and via online blogs and articles."
NEXT LIVING WITH EDS/HSD WEBINAR “Differential Diagnosis of Headaches in the EDS Population” with Fraser Henderson, Sr., MD This free webinar will take place Wednesday, May 30th at noon Eastern. You MUST sign up to attend. Click below for more details. ehlers-danlos.com/webinars/
.@ArefaMD reports on the findings of a systematic review of ARBs versus ACE inhibitors for #hypertension: ms.spr.ly/6011rF4TJ #MorningReport
Follow us for more EDS/HSD Myths and Truths during Ehlers-Danlos Awareness Month! Learn more about the Ehlers-Danlos syndromes (EDS) and hypermobile spectrum disorders (HSD) at ehlers-danlos.com.
Ehlers-Danlos in The New York Times! "Could the headaches and the nystagmus be related in some way to her EDS? the parents asked. Probably not, the neurosurgeon told them." ow.ly/Hclu30jSj4u
Melatonin may decrease #migraine frequency: ms.spr.ly/6014rFUx8

Dummer. @Dummer238892
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Donald @Tetoa286262
15 Followers 2K Following Be brave enough to choose the life you want to live and stick to it. This is a great life.
Kayla @mikalam89
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Probably Genetic @ProbGenetic
602 Followers 758 Following Rare genetic conditions can take years for doctors to diagnose. #ProbablyGenetic is a personalized healthcare company working to help you find answers.
Pro Bono Omics @ProBonoOmics
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Thermal-Aid @Thermal_Aid
3K Followers 3K Following 100% Natural Heating and Cooling Packs. Great for Sports Therapy, Migraine Reliever, Children and Pets!
Philippe Pakter @PhilippePakter
180 Followers 599 Following Director of patient advocacy group for children suffering from the rare disease, Pierre Robin Sequence. Rare disease dad.
Mindy Duell, BCBA @duell_mindy
32 Followers 110 Following BCBA, Autism/Behavior Specialist, Advocate for students with disabilities, Seeking to change the story of disability around the globe
Christine @crshore
67 Followers 1K Following I write. I read. I support liberal/progressive causes. she/her
22qSyndrome @22qSyndrome
381 Followers 1K Following Genetics Healthcare Patients Research mentalhealth Science patientcentered medicine awareness advocacy 22q syndrome immune neuro system development education
Babysittersofcharlot @charlottebabys1
446 Followers 3K Following Owner of a national babysitting agency that provides back-up childcare to employees!
DrPasEle @DrPas84Ele
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RARE Revolution Magaz... @RareRevolutionM
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Lisa Ramona @lisaramona816
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Eden Lord @emlord
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367 Followers 591 Following Housewife of an Amazing Daughter Living with Mast Cell Disease!!
Holly Barbour @hkbarbour4
45 Followers 247 Following Daughter of Christ•Wife•MamaX3•JCPS Educator•Lifelong Learner
Rahsaan Kearney @EvolutionOrtho
20 Followers 121 Following EVOLUTION ORTHO HAS: created and are Revolutionizing orthopedic shoes for children and Young Adults.. YouTube Evolution Ortho. [email protected]
Connexion Healthcare @ConnexionHC
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Nicole Rare Blounts D... @nicolecooks4
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RCH Publications @RCHPublications
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DNA Today: A Genetics... @DNATodayPodcast
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ThriveRx @ThriveRx
257 Followers 208 Following We’ve moved. Please follow us @Optum. For customer care tweet @Optum_Support.
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951 Followers 3K Following Raising awareness for #EctodermalDysplasias & #RareDiseases. WI Mom fighting for #congenitalanomalies coverage #EnsuringLastingSmilesAct #ELSA
ADCY5.org Community @adcy5
375 Followers 2K Following Supports #raredisease ADCY5 gene variant population - patients, doctors, researchers. #ADCY5 #AC5 #adenylylcylcase
Steve Grossman @stevenjgrossman
2K Followers 3K Following Also find me (@)https://t.co/8TVq95hzv5 - Interested in #RareDisease, #ADCY5, #outdoors, #soccer
Social Rugrats CLT @SocialRugratCLT
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651 Followers 3K Following 🌟 🌟 Have more fun in bed: Watch our favorite 20 ME Videos 🌟 🌟#MEeps #Invisibledisabilities #ChronicFatigueSyndrome #MillionsMissing #Pwme #MyalgicE #Spoonies
Cyndy Hartman @CyndyHartman
462 Followers 2K Following Wife, mom, fur mom, rare disease advocate/patient/parent, family historian, future genealogist, D.A.R. member, sm biz owner, nonprofit volunteer @WAGSwhittier.
Zellweger UK @ZellwegerUk
732 Followers 3K Following Supporting families with children dealing with the life limiting condition Zellweger Syndrome. With the aim to fund much needed research.
onevoice by rareLife @onevoiceworld
570 Followers 536 Following Encouragement, Knowledge & Collaboration in Rare Diseases: onevoice is a technology solution brought to the rare disease community by @rareLifetalks
OrganicAllergyRelief @ClearAllergies
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#Aggrecan / #ACAN Gen... @ACANGeneVariant
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Sarah Tompkins 🦽�... @SarestBearest
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lghgfygj @ardggjhjhfbvjh1
89 Followers 2K Following #*DON'T WISH OUT LOOK FOR ANY WORK ..THINK BIG ...BE SMALL...*# INDIAN
RDLA @RareAdvocates
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EveryLife Foundation @EveryLifeOrg
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Laura Lane @LLane75
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The Ehlers-Danlos Soc... @TheEDSociety
24K Followers 5K Following The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Bhagwan Dathiya @BhagwanDathiya
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Daniel Stowe Botanica... @carolinasgarden
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NC Emergency Manageme... @NCEmergency
70K Followers 276 Following Helping North Carolinians prepare for, respond to & recover from disasters & emergencies. View our social media policy at https://t.co/bBiJYAR5FK.
Yoni - יוני (and ... @Primary_Immune
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Mastocytosis Society ... @MastocytosisCA
625 Followers 840 Following Providing support & education, for dealing w/ Mastocytosis, MCAS & related disorders.
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NIH WALS @NIHWALS
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Human Genome Org @humangenomeorg
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Bernard Khoo @bernardkhoo
435 Followers 490 Following Senior Clinical Lecturer, UCL Medical School. Endocrinology, Metabolism, Endocrine Genetics and NETS. Views my own.
MEGLATHERY MD: RCCX T... @RCCXTheory_MD
1K Followers 12 Following In July 2015, I founded the RCCX Theory. Website https://t.co/H5tXqgjVoC, born 2/16 . FB Group: RCCX and Chronic Chronic Illness Discussion run by me...Join Us!!
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Nature Reviews Geneti... @NatureRevGenet
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NatureRevClinOncol @NatRevClinOncol
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Nature Reviews Cancer @NatureRevCancer
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Nature Reviews Nephro... @NatRevNeph
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Nature Reviews Cardio... @NatRevCardiol
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Addison's Disease Sel... @AddisonsUK
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