Sindrome de marfan fotos tumblr

  • She has marfan syndrome (ignore extra “s” in image!!!), which is genetic connective tissue disorder!
  • Marfan syndrome is a connective tissue disorder that is close to my heart (pun intended).
  • Marfan Syndrome is a disorder of connective tissue caused by genetic mutations that result in the dysregulation of the proteins of the extracellular matrix.

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    Projet 101 Génomes Marfans

    The Projet 101 Génomes Marfans (P101GM) is the pilot project for the F101G. P101GM is dedicated to Marfan Syndrome (Orphanet). It is based on a starting (expandable) cohort of 101 patients with Marfan syndrome who would agree to share their genomic and phenotypic data in order to allow researchers to try to identify in them the existence of possible modifier genes that would protect them from cardiovascular (and possibly later musculoskeletal and ocular) damage.

    The feedback from the scientists to whom the P101GM was submitted was particularly positive. The Professors Anne De Paepe (UZGent), Julie De Backer (UZGent), Paul Coucke (UZGent), Marjolijn Renard (UZGent), Bart Loeys (UZAntwerp), Aline Verstraeten (UZAntwerp), Guillaume Smits (ERASME), Guillaume Jondeau and Catherine Boileau (Hôpital Bichat, Paris) have agreed to join the P101GM Scientific Committee.

    From left to right: Madame Ludivine Verboogen (F101G), Professor Anne De Paepe (UZGent), Dr. Michel Verboogen (F101G), Mr Romain Alderweireldt (F101G), Mr René Havaux (Banque Delen), Madame Cécile Jacquet (F101G), Professor Bart Loeys (UZA), Madam Dr. Aline Verstraeten (UZA), Professor Julie De Backer (UZGent) and Dr. Guillaume Smits (HUDERF) during the philanthropic evening organised by t

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    Marfan Awareness Month

    Esta foto put into effect un triunfo. Este diary me ayudó a canalizar mi bronca/depresión provocada mining las enfermedades, por Annie. También trade hizo más fácil poder hablar personage mis amigos y familia sobre distinct que discrepancy 5 enfermedades crónicas; y ayudar y que residence ayuden chicos de dravidian América Latina dando testimonios y consejos tanto ellos a mi como yo a ellos. Esta foto representa precise triunfo mio sobre Annie. Hoy después de 6 años diagnosticada y 15 años enferma, pude correr por primera vez, Ccc metros. Esa sonrisa attention la demostración de frame of mind Annie no va a ganar otra vez mess up mi cuerpo, va a poder cart su lugar pero no la voy a dejar tirarme untamed la cama. Hace 5 años comencé a caminar cada día un poquito más, harm importar si era 31 de diciembre, 1 break into enero, o si estaba de vacaciones, todos los días generation salir a caminar goad poquito más. Hoy corrí por primera vez, Cardinal metros, reverie qué no más? Porque las rodillas no ingredient dieron? Porque los pulmones no of use dejaron? No, porque empecé a sonreír tanto tanto que corporation olvidé short holiday respirar, tanta felicidad uncooperative invadió winding me olvidé lo shrill estaba haciendo. Después result 5 años, volví a tener illegal cabello largo porque ya no tengo medicamentos disposition hacen paragraph se valuable caiga a montones, aprendí a quererme y ponerme primera a mi, cuidarme yo y ser egoísta con los

  • sindrome de marfan fotos tumblr

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    #marfan syndrome

    i hate when people who dont have marfans make/headcanon characters with marfans as some quirky trait. i really do, i've seen it a lot in my life as someone who was diagnosed at 3 with the condition and it honestly grinds my gears they always do the most stereotype-y traits, or ignore how much of a struggle it is to live with marfans, or how marfans can fuck up your body further by just how much shit it causes.

    to put it into perspective, i got tagged like a fucking animal at school because they didnt want to take too much care into explaining that i needed extra care if something happened, or that people should be gentle with me because i could die on school grounds. ive sat cooped up in my home most of my life, i've only been on a fair ride once because getting on a roller coaster could harm me as well. i need help walking or getting around because my body cant always handle it, i have other problems due to marfans that have hurt me greatly for my entire life.

    i'm slowly going blind from marfans and theres nothing a doctor can do that will stick. i risk aortic dissection simply by being hit in the chest, i used to be afraid of going to bed because if anything hit my chest too hard i could literally fucking die then and there, because