**Post sponsored by Novartis
Are you seeing how much content is coming out about CSU?
Sometimes I remember my desperation back in 2004, when I started to have symptoms, to at least know something about the disease I had.
For me, who lived this entire period with hives – and most of it without knowing the diagnosis – it is a celebration to see the movement that is taking place to raise awareness of the disease.
A CSU – chronic spontaneous urticaria – perhaps one of the most difficult types of hives. It appears involuntarily, it is not related to anything you ingest and this can greatly confuse the patient in their day-to-day life with symptoms.
You try to observe and relate in your routine to understand what led to those exacerbated crises of the disease, but you find nothing!
Unfortunately, this was my path and it is still the path of many people!
A Ipsos Brasil did a survey recently and brought some data about the UCE. This research found that around 90% of Brazilians are unaware of CSU, with at least 1 million people affected by the disease here in Brazil.
It's scary!
There's still a lot of work to do, and I'm so excited to imagine that we've started!
I remember the day I found the first reference on the internet that talked about spontaneous chronic urticaria, it was the Skin To Live In. There they posted content talking about the difficulty in managing symptoms and how their quality of life was impaired due to hives.
It was liberating to read each and every word!
That's because I thought these things only lived in my head, when in fact, many other people were going through it too.
This page was international, and I was very interested in knowing if there were more people with these same difficulties here in Brazil, so I I decided to record a video and play it on the internet. This is how 3000dias was formed.
If we stop to think, every disease needs to be informed, for break prejudices and also generate awareness about medical monitoring and treatment. Therefore, around here we are very happy to think that CSU, this type of urticaria so left aside and forgotten by many, has been highlighted.
One of the things I've realized in all this time as a patient, and now also, a voice of content about the disease, is that guilt is the main thing that comes up (and it needs to be overcome) in those who have CSU, but don't know it. Exactly because the person wants to try to find the reason for the disease, and this leads them to believe that they may be “manufacturing” it.
– Does it have to do with what I ate?
– It could be my perfume…
– I think it’s more the stress…
These are endless statements that have nothing to do with a disease that is autoimmune, that is, it is a deregulation of the body itself, which has nothing to do with any external factor.
I strongly believe that this UCE awareness campaign It will alert those who don't know about the disease, but even more so, it can be a precious hug for those who live with it and need to feel safer.
Recent Comments