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Primero agradecer a Dios, porque hoy es un dia muy especial en mi vida, en la vida mi esposa, de mi familia y de todos, esta felicidad es unica, es algo increible, no hay palabras para decifrar todo lo que siento y sentimos con el resto de mi familia, no encuentro palabras para decirlo, simplemente a Dios gracias, porque nos ha mandado una gran bendiciom #Fabry Eliam Caicedo Villafuerte, te amamos hijo te protegeremos, estoy feliz muy feliz😘😚😁👏👌💪💪

Well... big news. I've been searching pretty desperately for answers to my health that just keeps getting worse. As you all know, I was diagnosed with Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia last year after an uphill battle to get a diagnosis. I thought I was done searching, but I just keep getting sicker and sicker. It wasn't until I got skin biopsy results back that I was given a major clue: the biopsies had zero sweat glands in them, even after resectioning. The neuropathologist who analyzed the samples said this was probably due to sampling error, but I realized that I didn't actually sweat at all in the places the biopsies were taken. This lead me to consider a super rare lysosomal storage disorder called Fabry's Disease. I sent an article on the clinical presentation to my father, who replied with a picture of red dots all over his stomach; they were angiokeratomas, a huge marker of Fabry's disease. I had no idea he had them because I don't see my dad without his shirt often! Haha. I shot an email to my neurologist asking if Fabry's was a possibility, and she said yes. She referred me to a doctor with a very long wait, so I nabbed the diagnostic algorithm from Mayo and brought it to my PA. My PA agreed with my hypothesis and ordered the test. On Monday, about a month after this transpired, I woke my boyfriend up by screaming-- the results were in and it is Fabry's. Fabry's is deadly and my father is past the life expectancy, so my heart broke at the thought of coming so close to losing him. Fabry's is treatable. There is an infusion drug that stops the progression of the disease and improves symptoms. Looks like I am going to med school after all! You bet that is going on my application. Lol. #samejobdifferenttitle #noraise #fabry #fabrys #fabrysdisease

E assim foi o fim de semana... Um pouquinho de descanso e muito aprendizado... Volto já querendo implantar tudo.. E como aprendi: a doença pode ser rara, o conhecimento não!
#fabry #genzyme #sanofi #enfermagem #amordialise

Fábry Sándor úrral📸 #fabry #models

"Május 19-én (csütörtökön) a Duna TV-n 20:35-kor kezdődő Fábryban Anna és Mariann is vendégek közt lesz. Rekeszizmokat készíteni! ;) "
#pelleranna #pellermariann #fabry #dunatv #operettszinhaz
Forrás.: Peller Anna Fan Club(facebook)
Fotók.: Fábry

Dupla platina 💿💿 @hooligansofficial #igaztortenet #fabry

#lastfriday#Fabry 🔞⭐️

Se trabajo en lo de #Fabry 🍸🍹 Ahora si a dormir 🤗

MOST RECENT

All we can do is our best. #berarebeyou #Fabry #raredisease #CFA

Primero agradecer a Dios, porque hoy es un dia muy especial en mi vida, en la vida mi esposa, de mi familia y de todos, esta felicidad es unica, es algo increible, no hay palabras para decifrar todo lo que siento y sentimos con el resto de mi familia, no encuentro palabras para decirlo, simplemente a Dios gracias, porque nos ha mandado una gran bendiciom #Fabry Eliam Caicedo Villafuerte, te amamos hijo te protegeremos, estoy feliz muy feliz😘😚😁👏👌💪💪

El gordo #Fabry

Just one week away from #eveningofhope on October 25th & we're pumped! 💫

When 5am meets #fabry infusion day. #fabrydisease

Early morning upper body lift. Standing on one foot forces you to incorporate balance and makes your core come into play! .
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#babymusclespoppingout #lift #strongforme #weightlifting #crosstraining #fitnessblender #athomeworkout #homeworkout #fabrydisease #fabry

Poker d'Assi Nerazzurri... #Fabry #Trivela #Tano #laganheart

Lower body strength this morning at 5am. I've done this same workout before but it's been a while and I could tell! Legs were a little shakey stepping up on that chair. I live a good lifting session! .
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#fitnessblender #homeworkout #athomeworkout #strongforme #crosstraining #lift #strengthtraining #babymusclespoppingout #RIDEfarRIDEstrong #runforfun #runhappy #run #fabry #fabrydisease

Good Morning PSI Family & Friends! Hope your Monday is filled with lots of love #MondayMotivation

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