{"id":158,"date":"2015-02-06T22:26:15","date_gmt":"2015-02-07T04:26:15","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=158"},"modified":"2015-02-06T22:26:15","modified_gmt":"2015-02-07T04:26:15","slug":"jose-antonio","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2015\/02\/06\/jose-antonio\/","title":{"rendered":"EINZELPERSON MIT LGMD: Jos\u00e9 Antonio"},"content":{"rendered":"

02\/06\/2015:\"LGMD2B<\/a><\/p>\n

NAME<\/strong>: Jos\u00e9 Antonio<\/p>\n

ALTER:<\/strong> 48<\/p>\n

LAND:<\/strong> M\u00e9xico<\/p>\n

LGMD Unter-Typ:<\/strong> LGMD 2B\/Dysferlinopathie<\/p>\n

In welchem Alter wurde bei Ihnen die Diagnose gestellt?<\/strong> im Alter von 46 Jahren<\/p>\n

WAS WAREN IHRE ERSTEN SYMPTOME?<\/strong>
\nDie erste Muskelschw\u00e4che bemerkte ich im Alter von 30 Jahren. Bei mir wurde ein Herzproblem in der Aorta festgestellt, und der Kardiologe dachte, meine Muskelschw\u00e4che sei darauf zur\u00fcckzuf\u00fchren. Ich lie\u00df ein EMG machen, und die Ergebnisse waren in Ordnung, aber ich st\u00fcrzte immer wieder, stie\u00df gegen Dinge, hatte keine Kraft in den Beinen, um Treppen zu steigen, oder in den Armen, um schwere Gegenst\u00e4nde zu heben. Ich glaube, das alarmierendste Symptom war, als ich entdeckte, dass ich nicht mehr springen konnte, da wusste ich, dass etwas nicht stimmte.<\/p>\n

HABEN SIE ANDERE FAMILIENMITGLIEDER, die an LGMD leiden: Nein <\/strong>
\nWAS SIND F\u00dcR SIE DIE GR\u00d6SSTEN HERAUSFORDERUNGEN IM LEBEN MIT LGMD:<\/strong>
\nAlles! Sobald mir jemand hilft, aus dem Bett aufzustehen, muss ich in einen speziellen Stuhl steigen, um auf die Toilette zu gehen, und dann muss mich jemand hochheben, damit ich in einen Rollstuhl steigen kann. Von Montag bis Freitag habe ich Physiotherapie. Der Physiotherapeut hebt mich mit einem Gurt hoch und ich gehe mehrmals 10 Meter mit ihm. Er l\u00e4sst mich meine Arme mit 1 kg schweren Gewichten beugen, dann heben sie mich in mein Fahrzeug und bringen mich zu meinem Arbeitsplatz, wo ich in meinem Fahrzeug bleibe. Das Traurigste daran ist, dass ich meine Kinder aufwachsen sehe und nicht mit ihnen einfache Dinge unternehmen kann: Strand, Kino, Parks usw. Meine Frau ist diejenige, die dies tut; sie ist mir sehr zugetan und hilft mir sehr.<\/p>\n

WAS IST IHRE GR\u00d6SSTE ERRUNGENSCHAFT:<\/strong>
\nIn der Lage zu sein, mit meinen Kunden in Kontakt zu bleiben und auf meine eigene Weise weiterzuarbeiten.<\/p>\n

WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND<\/strong>:
\nIch habe gelernt, die Menschen zu sch\u00e4tzen, die mir helfen, Geduld zu haben, hoffnungsvoll zu bleiben und Depressionen zu vermeiden, f\u00fcr alles dankbar zu sein, Menschen zu verstehen, die nicht in der gleichen Situation sind wie ich und die sich in einer schwierigen Lage befinden, zu sch\u00e4tzen, was ich habe und zu sparen, meiner Familie jeden Tag mehr Liebe zu geben, als w\u00e4re es der letzte.
\nWAS SOLL DIE WELT \u00dcBER LGMD WISSEN?<\/strong>
\nWie schwierig es ist, kleine Dinge zu erreichen, die f\u00fcr andere Menschen unbedeutend sind, damit sie \u00fcber diese seltenen Krankheiten Bescheid wissen und mehr Interesse daran haben, zu untersuchen, warum sie auftreten und wie sie vermieden werden k\u00f6nnen. Auch eine fr\u00fchzeitige Diagnose, damit die Patienten Vitamine einnehmen k\u00f6nnen, um Gesundheitsprobleme zu vermeiden, denn wenn wir weniger mobil sind, wird unser K\u00f6rper schw\u00e4cher und unser Immunsystem geschw\u00e4cht. Und schlie\u00dflich, und das ist das Wichtigste, eine Behandlung oder Heilung f\u00fcr diese Krankheit zu finden!<\/p>\n

WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE, WAS W\u00c4RE DAS ERSTE, WAS SIE TUN W\u00dcRDEN?<\/strong>
\nIch w\u00fcrde am Strand spazieren gehen, laufen, Treppen steigen, mit meinen Kindern verreisen, ohne dass sie sich Sorgen um mich machen m\u00fcssten. Mit meiner Frau an einem sch\u00f6nen Ort essen gehen und ihr f\u00fcr all die Liebe danken, die sie mir entgegenbringt, indem sie mir hilft und f\u00fcr mich sorgt. Ich w\u00fcrde meine Kinder umarmen, um ihnen f\u00fcr die Unterst\u00fctzung zu danken, die sie mir jeden Tag geben.<\/p>","protected":false},"excerpt":{"rendered":"

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