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February 29th is the #RareDiseaseDay! A special day for 13 million Brazilians with rare diseases like #idiopathic #pulmonaryfibrosis #ipf #cpfe, #systemicsclerosis #SSc #SScILD #ymphangioleiomyomatosis #lam
  and so many others!
A day to remember that the disease can be #rare, but NOT the #diagnosis ! After all, the #rare just wants #support, #care & be #welcome like all of us!
But they need all of us to be listened and respected in other to continue moving forward with #hope & making the world a better place for all ! " :) #rarediseaseday2020
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Related hashtags

#RareDiseaseDay #idiopathic #pulmonaryfibrosis #ipf #cpfe #systemicsclerosis #SSc #SScILD #ymphangioleiomyomatosis #lam #rare #diagnosis #support #care #welcome #hope #rarediseaseday2020

More from @PulmaoSA see all

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Marcos Nascimento, MD Pulmão: S.A.
@PulmaoSA
Boletim de atualização #APPT @PneumoPR sobre o novo #coronavirus #2019nCoV

📌 🇰🇷 Coréia do Sul elevou o alerta para o nível máximo após o número de casos atingir 602.
📌 Desde 22/ Fev o @CDCgov passou a *Não recomendar #viagens #🛫 para #idosos ou portadores de doenças crônicas como #DPOC para: a #CoréiadoSul #🇰🇷, #Japão #🇯🇵 além da #China 🇨🇳, incluindo #HongKong.
📌 Itália 🇮🇹 - Número de casos de #COVID19 ultrapassou 100, sendo 89 na região da Lombardia.

📌 China 🇨🇳 - Número de casos atingiu 76.936 com 2.442 óbitos.
Read 7 tweets
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Marcos Nascimento, MD Pulmão: S.A.
@PulmaoSA
Mediante comentário publicado online no @LancetChildAdol Wang et al. sugerem a adoção de um plano de contingência pelas #UTIs #neonatais afim de proteger e resguardar estes pacientes durante o surto 🌍 do novo #coronavírus #2019nCov : 📲
thelancet.com/journals/lanch… @SBPediatria
"1. Adotar precauções padrões para a higiene e desinfeção das mãos na entrada da #UTI #neonatal e o fornecimento de #EPI como luvas, máscaras #😷 #N95 ou #PFF2 e #óculos de proteção para #TODOS os #profissionaisdesaúde
2. Limitar & restringir imediatamente o n. de visitas nas UTIs #neonatais, assim como o uso de #EPI por parte de #visitas.
Read 6 tweets
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Marcos Nascimento, MD Pulmão: S.A.
@PulmaoSA
#TipofTheDay in #Pneumologia: Atualização sobre #Coronavirus #2019ncov na #China #🇨🇳:
@JAMA_current publicou a maior série de casos ( 138 pacientes hospitalizados por #pneumonia pelo #nCoV2019 📲 link:
ja.ma/2SoLbbu @PneumoPR @spptpneumo @spt_rs @lmcarambei @sbpt
Destaques:
✔️ Relato da maior série de casos com pacientes internados por pneumonia (#coronavirus) em Wuhan;
✔️ Contágio nosocomial foi responsável por 41,3% ( 57) dos casos, destes 17 estavam internados p outras razões e 40 (29%) eram profissionais de #saúde @minsaude @saudepr
✔️ Entre os 138 casos ( 40 são em profissionais de saúde & 17 em pacientes internados);

✔️ Os sintomas mais prevalentes entre os 138 pacientes foram: febre , cansaço, tosse seca;

✔️ Idade média 56 anos; @sergio_grava @dr_maurogomes
@marionunes51 @jeffs_araujo35
Read 5 tweets

Related threads

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Ian Stedman
@IStedman
February 29 (the rarest day) is #RareDiseaseDay and this matters a great deal. It matters to me and my family, but also to millions of others who have stories similar to ours. If you follow me on @Twitter, you probably know some of my story.
I don’t want to bore you by telling it again, but I do want to talk a bit about what I’ve learned since my #diagnosis and since becoming a #RareDisease #advocate.
The first thing I learned was that even though it was a relief to have a diagnosis...(i.e. some sort of validation that there was a reason I didn’t feel well my whole life), it was really really hard to come to terms with having this new label.
Read 27 tweets
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Lars Pellinat
@Lars9596
#Thüringen - Die #AfD Wirkt!

Und das ist gut so!

#ThueringenWahl #Kemmerich #Ramelow #Hoecke
2. Die Mainstream-Medien taten ihr bestes uns #Ramelow als einen gemäßigten #Linken zu verkaufen: "In der falschen Partei", "einer von uns", Gast in allen Talkshows bis zu #Lanz, aber Rot-#Rot-#Gruen fand keine Mehrheit!
#Thueringen
3. Liebe auch wie die Mainstream-Framingmedien ständig vom Willen der Wähler sprachen: Aber Rot-#Rot-#Gruen hat nur 42 Sitze im Landtag #Thüringen, #CDU + #AfD + #FDP haben zusammen 48!

Also was wollte der Wähler? Rot-#Rot-Grün? Wohl eher nicht!
#Kemmerich
Read 21 tweets
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SSC CDMX
@SSP_CDMX
#SSC informa: Efectivo de la SSC repelió la agresión de una persona armada en un inmueble del #CentroHistórico...
...Policías de la Secretaría de Seguridad Ciudadana #SSC de la Ciudad de México, recibieron la emergencia vía radio que en un inmueble ubicado en el Callejón Primo Verdad, colonia Centro, alcaldía Cuauhtémoc, se registraban detonaciones por arma de fuego...
...Al arribar al punto, un uniformado tuvo contacto con una persona que portaba un arma de fuego, así como cuatro personas más que presentaban heridas de bala, quienes se encontraban tirados en el patio del inmueble...
Read 7 tweets
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l̴o̴o̴p̴u̴l̴e̴a̴s̴a̴
@loopuleasa
Day 92:

To be manipulative is to purposefully engineer the signals you give out in order to deceive.

To be authentic is to be open, honest and integral, to mirror on the outside what is on the inside.

Make sure not to fool yourself
Authenticity is courage and strength
Day 93:

Feeling is the water flowing down the river
Reason is all the rocks and obstacles that divert its flow

A man without his or others' feelings is like a dry river bed

A man without reason and self-control is like a flood, to drown all that is living
Day 94:

If you're not disabling all notifications on all devices (messaging and mails included) you are giving others control over your life. You become a slave to them, and their algorithms.

Disable them.
Read 114 tweets
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ElizabethJB
@ElizabethJBond
THREAD:
I'm pleased that today is #RareDiseaseDay as I'd like to raise awareness of something close to my ❤️ - a condition called "Genitopatellar Syndrome".

Chances are you haven't heard of it as only a handful of people in the world have been officially diagnosed with it. /1
Sadly, one of them is my three-year-old niece. She's a sweet, smiley little girl who brings joy to all who know her. But she has also suffered multiple health problems since birth. These include blindness, club feet, hole in the ❤️, a missing corpus callosum, & kidney issues. /2
This #RareDisease is caused by a mutation of the KAT6B gene. Not much is known about it as it was only identified as the cause a few years ago. This link provides a good overall summary, though I believe the gene can mutate in different ways dovemed.com/diseases-condi… /3
Read 9 tweets
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Eldritch Zebra
@chrysslyn
#RareDiseaseDay 2018, Part 3: Corn Allergy
Food allergies are not rare. However what IS rare is being so allergic to corn that you can have anaphylaxis from just smelling popcorn or corn chips and from cross contamination with traces of corn.
Even though I have over 30 triggers besides corn that cause me severe reactions, corn is STILL the reason for most of my food and activity restrictions. I have severe or even life-threatening reactions to the following things:
- Citric acid used as a preservative in food such as jams and jellies, or soaps such as Dr. Bronners. People think that citric acid is from citrus fruit, but actually it's produced by fermentation of aspergillus on a corn dextrose medium.
Read 17 tweets

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#Kerala #America #Gambia #NothKorea #SouthKorea #DieLinke #CDU #Coronavirustoronto #Arbeitsbegriff #Ramelow #Hoecke #Washington #IMF #Fentanyl #RAC #Huawei #Marriott #CoronavirusFrance #ThueringenWahl #IndiaArgentina #Mauritius #warning #Cybersecurity #RareEarths #NorthCarolina

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