As reported on Becker’s Hospital Review, the FDA has approved a first-of-its-kind pulmonary heart valve that can be enlarged after implantation, potentially allowing the device
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#invisibledisabilities #marfansyndrome Marfanov SindromNeštetokrat sem se znašel v situaciji, ko sem moral pojasnjevati, zakaj ne morem nekaj narediti. Zakaj ne zmorem. Zakaj izpustim določene stvari. Zakaj potrebujem počitek, svoj mir, svoj ritem....
In velikokrat ni najtežje to, da nečesa ne (z) morem ampak, da moram še razlagati, se upravičevati, dokazovati, da je moje telo in moja realnost drugačna. Da tudi jaz živim svoje življenje, le na svoj način in po svojih zmožnostih.
Vsak nosi svoj nahrbtnik. Moje "zmorem" ni enako tvojemu "zmorem". In to je povsem v redu.
Tudi če se ne vidi na zunaj, to še ne pomeni, da ni resnično. Ni lenoba, ni pretiravanje, ni izgovor, je dejstvo. To je nevidna invalidnost. BISTVO JE OČEM NEVIDNO. In včasih res najbolj potrebujem malo več posluha, manj sodb in predvsem: več razumevanja, da vsak živi po svojih močeh.
Hvala vsem, ki ne sprašujete vedno "zakaj", ampak rečete "razumem". To mi pomeni več, kot si lahko predstavljate.
Naj ta zapis (spre) govori v imenu vseh bolnikov, kateri se borijo s posledicami NEVIDNE INVALIDNOSTI.
#redkebolezni #invalid #invalidnost #NevidnaInvalidnost #bolezen #ozavescanje #zivljenje #bolnik #marfanovsindrom #FBN1 #vezivnotkivo #EhlersDanlos #LoeytzSindrom #hrbtenica #skelet #srce #oko #aorta #zaklopke #Operacija #druzba #javnost #dusevnost #mentalnoZdravje #zakaj #razumevanje
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