Doenças raras: entenda desafios para diagnosticá-las

DOENÇAS RARAS

cottonbro studio/Pexels

[{"selector":"#anim-affa3313-c15c-43bf-8695-b46eeccb9292 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(19.884349764362987%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] [{"selector":"#anim-b6f1d23d-8ab7-4147-8347-4c23ad2fc781","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-de644de8-2cae-4ae3-8961-1ea214d3a98b","keyframes":{"transform":["translate3d(-85.14851%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-f2146e23-da06-4e00-9465-fe6e8a919167","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-73ed5969-adaf-4264-b387-22fea2d5f92b","keyframes":{"transform":["translate3d(-117.97753%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] DCStudio/Freepik As doenças raras são aquelas que afetam até 65 pessoas em um grupo de 100 mil habitantes, diz a Organização Mundial de Saúde

[{"selector":"#anim-615576b5-f98c-450d-a12b-d19023c8404d","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-779925be-0d86-45bb-ae62-ab0897c9fd5e","keyframes":{"transform":["translate3d(-85.14851%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-15b42a93-75a7-41f9-aadd-d7df5cd11bc9","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-ddddc72a-6334-46aa-a24b-0b35e1bc8ad9","keyframes":{"transform":["translate3d(-117.97753%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-d64761f7-78f8-4353-8b29-7027e59a3868 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate(0%, 0%) scale(1.5)","translate(0%, 0%) scale(1)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"forwards"}] De acordo com o reumatologista Sandro Perázzio, que é o coordenador da Comissão de Doenças Raras, são 7.500 doenças mapeadas RF._.studio/Pexels

[{"selector":"#anim-886c19dd-fa45-495d-a7cc-5c8a637002f5 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-17.90121609895816%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] [{"selector":"#anim-a4218308-9746-476e-9fea-db8e44cd35d5","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-d3ed4663-4b6b-47c4-8858-93e228f37e01","keyframes":{"transform":["translate3d(-85.14851%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-613f4fcc-5dfa-40f4-849e-f62205110257","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-8852d9f7-e6a7-4641-a53a-8923fa58891d","keyframes":{"transform":["translate3d(-117.97753%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] Pressfoto/Freepik Como o próprio nome diz, por serem raras, há desafios para o diagnóstico

[{"selector":"#anim-aaaa4b8e-d6c5-4075-9490-22d71b703769","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-e5da24d4-7cd0-47a8-b4d9-38b98d04843b","keyframes":{"transform":["translate3d(-85.14851%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-93f502d9-2c41-49cd-a4e6-e97add041953","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-49fa1fe2-dfa3-47ca-9764-e38b0895e640","keyframes":{"transform":["translate3d(-117.97753%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-ea65aa42-e8ec-443c-a03b-c0a9a9e1bdbd [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-15.581929043650284%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] “O primeiro deles é identificar, desde o diagnóstico aos exames, seja pelo preço ou por apenas alguns estabelecimentos serem capazes de realizá-los”, pontua o especialista Prostooleh/Freepik

[{"selector":"#anim-24135b61-6147-4e9e-9600-03bbf7f46a93","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-9d9bf8ed-dacd-4a2c-a3b1-6591f079869d","keyframes":{"transform":["translate3d(-85.14851%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-b652efde-a4f6-4088-9425-da0511f0dc93","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-44748965-064e-40e7-97d7-cc96cbfe0932","keyframes":{"transform":["translate3d(-117.97753%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-c853b448-73ba-426d-a1c0-77e6f2332074 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(-16.89589767118254%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] Depois, o segundo, é o “encaminhamento para serviços de referência, que são poucos” Rawpixel.com/Freepik

[{"selector":"#anim-89cbff71-9943-4b2c-b67f-2f7aed866c94","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-0d3f00af-de52-428c-8706-a5003e9a6ffb","keyframes":{"transform":["translate3d(-85.14851%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-fe550cd1-db81-4e70-966f-ba3e81a58a36","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-6bf8ee9e-b9cc-4f8a-95e4-c6c9b36cbd8e","keyframes":{"transform":["translate3d(-117.97753%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-e8ba9122-5503-44f0-ae95-b3b3ec0984d6 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(14.192385450663778%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] Por último, é o acesso às medicações: “Ele é complicado, os tratamentos tendem a ser custosos” Pixabay/Pexels

[{"selector":"#anim-e584ea50-2da9-49fe-9643-deb6077042c3","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-f8759927-5a6d-4137-b021-2bf9e6d3ecad","keyframes":{"transform":["translate3d(-85.14851%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-2c92a030-f9a9-40ce-9ea1-ec1d76acf24e","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-b407b404-1222-4948-a78c-d7889a01b9de","keyframes":{"transform":["translate3d(-117.97753%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-5020cce7-4ce4-40cb-b0df-ce3470acf0a2 [data-leaf-element=\"true\"]","keyframes":{"transform":["translate3d(20.257675256904886%, 0, 0)","translate3d(0%, 0, 0)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"both"}] Perázzio destaca que os diagnósticos variam de acordo com a doença e especialidade, mas que há sinais que servem de alerta Pressfoto/Freepik

[{"selector":"#anim-8db10dfb-6e32-4afb-a62f-fd78fbc73eb8","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-384f32e5-91b6-4706-8adc-f547fcbe078d","keyframes":{"transform":["translate3d(-85.14851%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-6f575b9a-4a58-433a-82bd-2ce85612fc83","keyframes":{"opacity":[0,1]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-8c0189ac-ca3f-4832-91a3-49560cf44f7c","keyframes":{"transform":["translate3d(-117.97753%, 0px, 0)","translate3d(0px, 0px, 0)"]},"delay":0,"duration":800,"easing":"cubic-bezier(0.2, 0.6, 0.0, 1)","fill":"both"}] [{"selector":"#anim-941ba1da-4361-4347-885a-4fd7832fec3d [data-leaf-element=\"true\"]","keyframes":{"transform":["translate(0%, 0%) scale(1.5)","translate(0%, 0%) scale(1)"]},"delay":0,"duration":2000,"easing":"cubic-bezier(.3,0,.55,1)","fill":"forwards"}] “Se há histórico familiar de alguma condição rara, mesmo de segundo ou terceiro grau, vale a pena conversar com o médico e possivelmente fazer uma investigação genética” Tima Miroshnichenko/Pexels

DOENÇAS RARAS

Entenda desafios para diagnosticá-las

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