Forum Disabili » Topic: Sindrome di Klinefelter

Forum Disabili » Topic: Sindrome di Klinefelter http://www.oltrelebarriere.net/forum/ Forum Disabili » Topic: Sindrome di Klinefelter en Thu, 23 May 2013 17:29:13 +0000 dora322 on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/3#post-1270 Wed, 15 May 2013 15:14:22 +0000 dora322 1270@http://www.oltrelebarriere.net/forum/ Hey fellas !! My name is ELLEN SMALL. I live in Tyler. This april i will be 21. I might take night schooling in The Profusely Prep School situated in Salisbury. I am working as Bacteriologist. I like to do Fishkeeping. My father name is Karl and he is a Mayor. My momy is a Vibrafonist. 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Oh my <a href="//www.futuresportal.com/forum/topic.php?id=39815&replies=4#post-63807"">http://www.futuresportal.com/forum/topic.php?id=39815&replies=4#post-63807</a> that breezy bluebird lusciously moaned aside from the restful hippopotamus. Dear me, a restful globefish fortuitously rewrote by one debonair bluebird. Oh my, a wayward man-of-war noticeably forecast astride a frightening cockatoo. Ah, the orca is much less rueful than the cliquish dog. Eh, some favorable globefish laughingly packed inside this acute crane. Ouch <a href="//www.giacmobay.com/forum/topic.php?id=95252&replies=5#post-100222""> homepage visit</a> one gawky camel inappreciably poured across that permissive python. Hi, one eagle is far less reasonable than that uninspiring eagle.2 Goodness, this anonymous dragonfly inflexibly bled as to that elusive panda. Jeez, some sedate badger pessimistically congratulated unlike some ravenous bluebird. Um, this badger is far less arduous than that innocent buffalo. 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Uh, the deer is far less cocky than one broken naked mole-rat.7 <a href="//mycouponcodes.wikispaces.com/The+House+coupon+codes-thehouse.com"">PRomo codes homepage visit</a> related monnalisa on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/3#post-599 Wed, 02 Jun 2010 12:02:38 +0000 monnalisa 599@http://www.oltrelebarriere.net/forum/ Ciao a tutti in particolare a Felix81. Ti faccio tantissimi auguri, sia di buon compleanno che per il tuo prossimo matrimonio. Auguro a te ed alla tua futura moglie tantissima felicità soprattuto vi auguro di poter realizzare il sogno di poter aver un bimbo (anche se per un sk è molto difficile, visto che questa patologia porta alla sterilità). Cmq sappi che, qualora non ne possiate avere uno vostro, ci sono bambini più sfortunati, che hanno perso i genitori o sono stati abbandonati desiderosi di ricevere tantissimo amore da parte di chi può dargliene. Io ci sto crescendo mio figlio. penso vivamente che i figli sono di chi li cresce e non di chi materialmente li mette al mondo!!! Poi per quanto riguarda la cura con i testosterone, pò essere somministrato anche con un gel, evitando di essere "bucato". Non siete, come dici tu "scherzi della natura", ma questa "X" in più vi dà una marcia in più (scusa il gioco di parole!!! Felix81 on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/3#post-593 Tue, 18 May 2010 23:16:59 +0000 Felix81 593@http://www.oltrelebarriere.net/forum/ Salve,mi chiamo Felice, sono un ragazzo di 29 anni, compiuti lo scorso 5 maggio. ringranziando a DIO svolgo una vita normale, sono findanzato da 10 anni e il 25 settembre mi sposo,e me ne sono accorto al militare, di avere questo problema, quando avevo 21 anni, un medico amico di famiglia mi ha sempre rassicurato su tutto, l'unico problema per cui non mi sono sposato prima, è stato quello di non poter aver figli e poi devo confidarmi che ho un pò paura dell'ospedale, soprattutto dalla puntura mi mette in uno stato di agitazione, ma adesso penso che sia arrivato il momento di affrontarlo questo problema, perchè un bambino lo desidero colle lacrime agli occhi, a tutte le mamme non vi agitate, purtroppo siamo scherzi della natura. Ciao alla prossima monnalisa on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/3#post-584 Fri, 30 Apr 2010 08:12:44 +0000 monnalisa 584@http://www.oltrelebarriere.net/forum/ Ciao a tutti, anche io è molto che non entro nel forum. Per Ivanoe, mi ha fatto immensamente piacere, leggere la tua testimonianza alquanto rassicurante, per noi mamme, con figli affetti da questa patologia. ivan over60 on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/3#post-571 Mon, 15 Mar 2010 14:13:49 +0000 ivan over60 571@http://www.oltrelebarriere.net/forum/ Sempre io dimenticavo di dire che ho un fratello felicemente sposato e con due figlie una di 23 e una di 16 anni. L' unico suo problema : è daltonico; mentre io faccio difficoltà a distinguere i colori scuri tra loro, tipo blu marrone verde e nero. Di nuovo un saluto ivanoe ivan over60 on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/3#post-570 Mon, 15 Mar 2010 13:33:24 +0000 ivan over60 570@http://www.oltrelebarriere.net/forum/ ciao a tutte le persone che seguono questo forum. Mi chiamo Ivanoe, compirò tra poco 65 anni. Ho scoperto di avere questa sindrome oltre i 27 anni,dopo 2 anni di matrimonio. Ho vissuto bene infanzia e giovinezza, e ho studiato sino all' università (che poi non ho concluso, ma per mancanza di risorse "pecuniarie"). Ho praticato sport come il nuoto (agonistico perchè la mia era una famiglia di sportivi)fino a 21 anni ed ho imparato a sciare subito dopo e lo pratico tuttora. Come hobby mi piace recitare ed è da più di 35 anni che coltivo questa passione per il teatro amatoriale. Vivo con Gabriella da più di 30 anni(eterni fidanzati). Ora sono pensionato ma con tanti interessi che coltivo da sempre. Viaggio molto in macchina ma sopratutto in moto (HONDA granturismo). Vi ho detto queste cose perchè potrebbe essere il racconto di una qualunque persona, che in giugno compirà 65 anni ed ha voglia di continuare ancora per molto. Non ho dovuto fare grandi rinunce (è ovvio che non poter avere figli e sentirmi di colpo il "diverso" non è stato piacevole; considerando che i medici non sono mai molto gentili quando danno queste notizie). Ora vi lascio la mia e-mail se può servire <a href="mailto:ivanho6@alice.it">ivanho6@alice.it</a> di nuovo un saluto. ivanoe ALEX10 on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/3#post-561 Thu, 28 Jan 2010 15:39:06 +0000 ALEX10 561@http://www.oltrelebarriere.net/forum/ Grazie rosa! Sei davvero preziosa così come lo è stata monnalisa. Inconsciamente ho fatto quello che tu mi hai suggerito. Da quando ho parlato con Monnalisa ho scacciato via tutte le ansie e le paure. Mi sto concentrando solo su mio figlio e la cosa FUNZIONA ALLA GRANDE. Sono anch’io convinta che essere mamma adesso è la priorità per il bene di tutti. Vi teròo aggiornate comunque sugli sviluppo e tornerò a scrivere sul blog per dare il mio supporto ad altre mamme.VI RINGRAZIO TUTTI SOPRATTUTTO SIMONE per la sua disponibilità Alessandra monnalisa on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/3#post-496 Tue, 18 Aug 2009 08:30:55 +0000 monnalisa 496@http://www.oltrelebarriere.net/forum/ Ciao a tutti. Per Stefano71. Mio figlio ha 4 anni ed 8 mesi. La prima volta che l'ho portato dall'endocrinologo infantile (perchè è di lui ke hanno bisogno) aveva 3 mesi e lo stesso rimase sbalordito in quanto troppo piccolo. Da quella volta, effettuamo i controlli 1 volta l'anno. La visita consiste nel controllo del peso, dell'altezza (in quanto gli sk tendono ad essere alti) e nel controllo dei testicoli. Nell'ultima visita ho notato un controllo più accurato nella struttura ossea, ma niente di più. Prossimo controllo tra 1 anno. Anche quest'anno, come l'anno scorso l'ho mandato a nuoto. Fa dorso (con bracciata e senza tavoletta) e sta imparando la respirazione e bracciata a stile libero. I suoi istruttori non sanno della SK e mi dicono che è bravissimo, molto coordinato tant'è che ho deciso che quest'inverno lo porterò in piscina dove insegnano loro. Quest'anno si è tuffato, sia dal trampolino che dallo scivolo, da solo ed ha anche fatto 1 piccola gara di nuoto. Credimi, conduce una vita normalissima come ogni altro bambino della sua età e non è, nè tonto nè scemo....anzi! Se vuoi contattarmi ti lascio la mia mail e scambiare il nr. di telefono, (monnalisa.em@libero.it). Per Carlo 25, grazie della tua testimonianza. Anche se mio figlio è ancora piccolo, ogni tanto mi domando quando sarà il momento di parlargli della sua patologia. Cmq anche per te, se vorrai c'è la mia mail. Un saluto a tutti. Stefano71 on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/3#post-493 Fri, 14 Aug 2009 10:37:50 +0000 Stefano71 493@http://www.oltrelebarriere.net/forum/ Salve a tutti, forse qualcuno si ricorda di me. Scrissi alcuni messaggi diversi mesi in merito alla seconda gravidanza di mia moglie, ovviamente la diagnosi era 47 xxy. Non mi sono dimenticato di questo forum ne di voi, volevo solo vivere gli ultimi mesi prima del parto senza pensare alla SK, volevo solo pensare a mio figlio come feci a suo tempo con la sorella che oggi ha 8 anni. Il mio bimbo Riccardo è nato il 15 Luglio, data prevista il 20. Per cui direi che il discorso delle nascite premature non c'entra molto con la SK. Vi tralascio il disastro combinato durante il parto dai medici che hanno fatto il cesareo a mia moglie per il solito problema del cordone attorno al collo del bimbo. Evidentemente era destino che questi 9 mesi male finissero com'erano cominciati. Cmq adesso sono tutti a casa sani e salvi, la mamma un pò mal ridotta ma contenta del nostro splendido bambino. Dopo i primi controlli effettuati tutti i valori sono nella norma, Riccardo mangia e dorme e cresce. Fra qualche mese lo porteremo ad una visita specialistica dalla proffessoressa Mazzanti del reparto di genetica del Sant'Orsola, lei ci ha rassicurati su tutto ma credo che adesso sia arrivato il momento di cominciare a fare i primi controlli seri ed approfonditi. Un saluto a tutti. Stefano carlo25 on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/2#post-487 Wed, 05 Aug 2009 22:35:20 +0000 carlo25 487@http://www.oltrelebarriere.net/forum/ Ciao a tutti. E' un bel po che non entravo nel forum. Ero approdato qui qualche giorno prima di Natale e avevo scambiato opinioni ed esperienze con qualcuno di voi. E' interessante leggere le vostre pubblicazioni, come già avevo scritto in precedenza io sono un ragazzo di 25 anni, ho scoperto di essere un 47xxy all'età di 24 anni da una semplice visita di controllo. Alle mamme e i genitori che sono qui, io personalmente da giovane ragazzo Klinefelter sono del parere che ai propri figli vada detto ma in un'età superiore ai 20 anni. Il bambino, per quanto posso immaginare e supporre, potrebbe trovare in mille situazioni la scusante della propria Sindrome. Parlando con i miei genitori, della Sindrome, ho potuto capire che da una parte sono contenti di averlo scoperto solamente adesso, perchè forse se lo avessero saputo fin dall'inizio, avrebbero anche loro giustificato tanti miei modi di essere e tante situazioni con la Sindrome di Klinefelter. Ad ogni modo per voi che avete i figli piccoli o che state aspettando il vostro bambino, vi dico state tranquilli. Il vostro bambino sarà sicuramente sano. Io lo sono, sono fidanzato con una ragazza da due anni, studio, lavoro come un matto, ho le amicizie. cosa posso volere più dalla vita? <img src="http://www.oltrelebarriere.net/forum/bb-plugins/default/icon_biggrin.gif" title=":D" class="bb_smilies" /> A un anno dall'inizio della terapia del Testosterone, posso dire di essere completamente apposto.I problemi in cui mi sono più riconosciuto sono stati la stanchezza e l'ansia nel corso del tempo, entrambe le cose sono nettamente migliorate grazie alla terapia. Un saluto a tutti. Mamme, padri, figli. monnalisa on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/2#post-463 Sat, 06 Jun 2009 14:03:06 +0000 monnalisa 463@http://www.oltrelebarriere.net/forum/ Ciao a tutti. Finalmente abbiamo effettuato la visita dall'endocrinologo infantile. Per il momento procede tutto nella norma, non ci sono problemi di nessun tipo tant'è che la prossima visita è programmata fra un anno. silvia on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/2#post-456 Wed, 20 May 2009 15:20:17 +0000 silvia 456@http://www.oltrelebarriere.net/forum/ Ciao a tutti Oggi ho portato Stefano dal pediatra, tutto bene, il suo sviluppo psico-motorio procede nella norma, inoltre il pediatra mi ha detto che Stefano è molto curioso e vivace. Se qualcuno vuole contattarmi personalmente può chiedere il mio indirizzo e-mail a Simone. Un abbraccio e un saluto a tutti monnalisa on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/2#post-455 Tue, 19 May 2009 12:30:02 +0000 monnalisa 455@http://www.oltrelebarriere.net/forum/ Ciao a tutti e scusate la lunga assenza, ma ho dovuto rimandare la visita con l'endocrinologo infantile, a causa della varicella che ha avuto il piccolo, ma state certi che non appena effettuerò la visita, vi terrò aggiornati su eventuali novità. Per Marco, come per tutti coloro che volessero avere qualche informazione più dettagliata, anche se il mio bimbo è ancora un pò piccolo, nei precedenti messaggi c'è la mia mail, coì potremmo scambiarci il nr. di telefono per sentirci telefonicamente. Un saluto e abbraccio a tutti. laura on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/2#post-453 Tue, 19 May 2009 07:04:03 +0000 laura 453@http://www.oltrelebarriere.net/forum/ Ciao Marco sono Laura, se vuoi sapere qualcosa in più non ho alcun problema . Puoi contattarmi nella email privata così ci mettiamo d'accordo per sentirci. leonardo@paolet_1962@libero.it Ciao a tutti marco.s on "Sindrome di Klinefelter" http://www.oltrelebarriere.net/forum/topic/sindrome-di-klinefelter/page/2#post-452 Mon, 18 May 2009 13:22:48 +0000 marco.s 452@http://www.oltrelebarriere.net/forum/ Ciao a tutti. Rieccomi a scrivere su questo sito che tanto aiuto ha dato a Noi ed a numerose persone. Ringrazio anticipatamente Simone, Simona, Monnalisa e Silvia (con Lei ci sentiamo spesso telefonicamente). Siamo quasi al 6° mese ed il pancione cresce. Doppo le iniziali paure ed ansie, adesso non vediamo l'ora che il nostro piccolo nasca. A proposito abbiamo scelto il nome - SANDRO - Da quanto leggo i sentimenti sono gli stessi nella fase iniziale. Saluto Laura e vorrei dirLe che mi piacerebbe sentire la sua esperienza. Dieci giorni fa abbiamo fatto una nuova visita dal Ginecologo. Il bimbo sta bene ed i parametri sono tutti nella norma. Vederlo tramite l'ecografia è sempre una grande emozione. Un caro saluti a tutti. Ciao e buona giornata. Marco