Con motivo del Día Mundial de la #Neurofibromatosis se celebra una campaña informativa difundida en todas las tiendas de ##Cafés #LaMexicana, así como en los canales de #Alexion y en los de la #AANF. La neurofibromatosis tipo 1 (NF1) afecta a... http://www.periodistadigital.com/elbuenvivir/20230524/cafes-la-mexicana-689404909027/ #enfermedadesraras #Salud

Hola titánicos cada 17 y 22 de mayo se celebra el día mundial de la neurofibromatosis, un trastorno genético en el que se forman tumores en el tejido nervioso, afectando severamente a la persona que lo padece, descubre en que consiste esta rara enfermedad

https://somosdisca.es/dia-mundial-de-la-neurofibromatosis-2023/

#tumor #tumores #neurofibromatosis #neurofibromatosisday #dia mundialdelaneurofibromatosis #cancer #discapacidad #capacidad #yosipuedo #disability #visibilidad #prevencion #cuidados #respeto #empatía #gentetitanica #somosdisca #dolor #dolorcronico

@MarkMaguire Thankyou for your post. I hadn't heard of rare disease day until I read your post. Neurofibromatosis is our rare genetic disease.
Second amazing thing I found out today is that there was already a hashtag for this condition.
#Neurofibromatosis

Let's beat NF! 💚💙
#neurofibromatosis

So have you ever looked at your medical records and seen a diagnosis code and said “what the actual F is that and why has no one mentioned THAT to me before?” #neurofibromatosis No? Just my luck? #disabilitytwitter I know about my #hEDS and #hemachromatosis but what the actual F. Seriously.

#LongCovid and #neurofibromatosis

Got Covid for the 2nd time in November. First exposure resulted in months of issues (fatigue, brain fog, memory loss, anxiety, insomnia, depression). Same issues this time. I am also experiencing tingling and feel as though I am under constant stress. Very irritable.

Has anyone seen anything regarding NF 1 and Long Covid? I saw a paper that concluded that people w/ NF were not esp susceptible to Covid, but nothing about the effects. Ideas?

2/ Most of my life the medical so-called "profession" has told me the pain, anxiety, etc., are all in my head.

I have a good Dr now, thank goodness. He listens, believes me, and does research. So far, we've discovered the #ChronicPain (currently diagnosed as #fibromyalgia) doesn't respond well to treatment. This may be because it's actually #neurofibromatosis but I can't do the MRI to confirm. Did I mention #claustrophobia?

My first real day on #mastadon has been interesting. I forgot how much time I put into finding the diversity that I had on the bird site. I'm still trying to find more folks in #compbio - specifically those who use #rstats or #networks in disease, those studying #cancer via #systemsbiology approaches, and anyone looking at #neurofibromatosis.

Time for an #introduction folks! I’m a computational biologist at a National lab. My daily job is varied but generally involves working on #cancer #proteomics , #neurofibromatosis , or #graph algorithms. I # toot about my work, my dog, my kids, my hobbies in the mountains or trying to juggle all of them.