Rara enfermedad la obliga a hacer grandes esfuerzos para comer, caminar y respirar

La mujer tuvo que dejar su trabajo, mientras que realizar tareas diarias se convirtió para ella en una verdadera pesadilla a causa de su esclerodermia sistémica difusa, una enfermedad autoinmune incurable.
martes, 15 de octubre de 2019 · 13:39

Una rara e incurable enfermedad autoinmune que causa el endurecimiento de la piel y puede afectar a los vasos sanguíneos y a otros órganos ha dificultado extremadamente la vida de una mujer británica, que tiene que realizar grandes esfuerzos par realizar tareas diarias como comer, cepillarse los dientes, caminar e incluso respirar.

Georgina Pantano, de 34 años, fue diagnosticada con esclerodermia sistémica difusa unas semanas antes de cumplir los 27, después de experimentar durante más de un año una serie de síntomas, como manos frías que se le ponían azules, dedos hinchados que se sentía doloridos y rígidos, dolor en muñecas y antebrazos, así como un dolor intenso en las caderas.

A esto se sumaron pronto problemas respiratorios, que hacían que Pantano se despertara por la noche sin poder respirar, mientras que su piel se volvió roja como si estuviera quemada por el sol y se le formaron úlceras llenas de pus en sus dedos.

En declaraciones a, Pantano relató que cosas tan simples como vestirse se convirtieron en "una verdadera lucha" y que sentía "un dolor insoportable, especialmente cuando hacía frío", de manera que apenas podía moverse. Por si fuera poco, "no tenía idea de lo que estaba pasando", ya que los médicos británicos no podían identificar los síntomas.

"Decidí que esta enfermedad no me vencería"

Entonces, Pantano buscó ayuda en Polonia, donde le dijeron que tenía esclerodermia y que esta se había extendido internamente por sus pulmones y el esófago. Los médicos recomendaron que recibiera quimioterapia cada tres semanas durante un año. En una entrevista con Scleroderma and Raynaud's UK, la mujer indicó que su familia casi tuvo que obligarla a comenzar su tratamiento en el país eslavo, donde permaneció por periodo de un año.

"Ha impactado enormemente mi vida, tuve que dejar mi trabajo y dejar atrás mi carrera como terapeuta de belleza", cuenta la Pantano, detallando que ya no puede usar sus manos como solía hacerlo, mientras que el tejido endurecido en su rostro y garganta le hacen difícil comer, entre otros problemas.

Ahora debe tomar medicamentos todos los días, incluidos esteroides y analgésicos, y se somete a chequeos regulares en el hospital. La mujer documenta su experiencia en Instagram para crear conciencia sobre este raro trastorno.

"Decidí que esta enfermedad no me vencería. He decidido mantenerme tan fuerte y positiva como sea posible", asegura.



Fuente: Actualidad RT 

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#SclerodermaAwarenessMonth : Looking different to my last post 🙈🥴🤪 When I took this photo last week I was about to go have a massage - and NOT for pampering - I wish! But to help with how stiff and tight my whole back and neck has gotten. My body stiffens up very quickly and when under added pressures like travelling, or long days out it’s just magnified. I need to have regular sessions anyway in order to try and keep as mobile as possible, without it I don’t even want to think how bad I would get. #LivingWithScleroderma this has become my maintenance routine, something I’ve got to plan into my week in order to maintain my quality of life. Sessions can be torture but worth the pain in order to have some relief. The following day I had a session booked with my chiropractor. These sessions can be tough but also essential in keeping me going. With his help we managed to get my treatments to monthly sessions but after my trip away we’re back to weekly sessions for now. It’s the cost I’ve got to pay for living and enjoying life with #Scleroderma 🤪🙈 I know it’s only natural that anyone would get tired after a busy time, but add a chronic condition to the mix and it’s seriously something completely different. And the prep/ recovery process is something I’d like to help raise some awareness of. In order to do something that requires lot of energy always needs preparation- resting before hand and organisation. The actual event itself is like running a marathon- exhausting, painful but we push through and enjoy the moment. After- Crash time! Immune system shot, body is extra stiff, sore, exhausted, brain fog, struggle even getting sentences out, symptoms flare, sleeping for days.. 🤷🏽‍♀️ and the cycle goes on and on.. it’s just how life goes.. 🌻 Finally though, something I’d like to get out there is that yes it is crappy dealing with the constant ups and downs of #chronicillness.. but being able to have the ups I’m so, so grateful for. I have a brilliant time 🙌🏼 and even feeling like 💩 after I’ll do it ALL again.. You’ve got to live your life to the fullest possible 💛 Just remember to allow yourself to rest afterwards (note to self.. 😝) #KnowScleroderma

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#livingwithchronicillnesses and getting ill on top of it all : Looking rough but feeling.. sooo.. much.. better! 🙌🏼🎉 The past couple weeks have been the worst, coming down with the flu on top of having #scleroderma really hit me hard.. like 🤔 being hit by a monster truck, a bus full of drunken unicorns then a chubby elephant on top! 🙈😐👎🏼🙅🏽‍♀️ Being on immunosuppressant meds didn’t help things at all either. Generally having a crappy immune system and lungs affected by scleroderma makes things a lot more difficult and pretty much hell 🤦🏽‍♀️😫 Buuuut 🤞🏼🤞🏼🤞🏼 without jinxing myself things are looking up.. (Party Time! 🥂.. not really.. but how I feel inside lol 😁) I also feel like I definitely learnt my lesson - the flu jab is a must! I was never entirely sure about the flu jab having an autoimmune condition.. But feeling this bad is not worth it. Next winter I’ll be first in line! So I’m sorry I’ve been really bad with things lately, rubbish with messages and having to cancel a lot.. but as things improve and I get back to my ‘normal’ I’ll be baaaack.. 💗💪🏼✌🏼#beingillsucks #livingwithscleroderma #sclerodermaawareness #autoimmunedisease #autoimmuneawareness #sclerodermawarrior #chronicillness #chronicillnessawareness #rarediseases #rarediseaseawareness #spooniecommunity #spoonielife #flujab #keepongoing xxx

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#SclerodermaAwareness : Eating..The struggle is real!😩😩 Today I just wanted to eat my magnum in peace 🥴🙇🏽‍♀️ but as soon as I opened it I thought.. Eeeep! Tough choice..this ain’t fitting in my mouth 🤦🏽‍♀️😐... #Scleroderma affects many parts of the body, my face being one of those parts..which means my mouth no longer opens normally. This photo is literally as wide as it will go, & if I’m having a fare up it can get even worse 🙈 Eating has become a real effort at times and can be really tiring. Personally I don’t really like eating in public anymore. Eating on the go.. hell no! All eating situations need some sort of consideration which is a real pain in the bum!.. especially when you just want to eat without any thought.. Damn it! 🤷🏽‍♀️🥴 Honestly, this is an area that can really stress me out. Depending on where I am, it can filled me with inner anxiety, feeling all flustered, really self conscious especially when there’s a lot of people around. The inner thoughts that I look weird because of my ‘scleroderma mouth’ creep in 🙊, worrying in my head that I’ll make an embarrassing mess 🤪🥴 or start choking because I can’t chew properly 🙈 Chewing has become something very difficult, if I don’t cut food up small enough I .. 1. struggle getting it in my mouth, then 2. struggle getting the food in between my teeth to actually chew 🤦🏽‍♀️ And there are the times it’ll just accidentally slip down my throat whole 😳 - and then I have an inner panic 😣 Otherwise, there are the many times that food just doesn’t want to go down at all and gets stuck 😏 (my oesophagus being affected causes the throat muscles to stop contracting as they should so food doesn’t go down as easily) causing the issue of vomiting 😖 - horrible and embarrassing 👎🏼🤦🏽‍♀️ Such fun stuff eh.. 😏🤷🏽‍♀️ My jaw muscles get tired and sore easily so whether it’s meals out or at home trying to pick things that are easier to eat, softer to chew and less drama is definitely the way forward.. The same as all things with scleroderma, accepting, adapting and taking it slow is the way we roll..✌🏼🙃💛🌻 #slowesteaterever 🥴 Oh and not to forget those dreaded mouth stretching exercises 🤪 Photos explain this part.. #therabite

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