Do you know much of the my story with hives. She goes through many moments. Since diagnosis saga and understand what a spontaneous type disease to get the right treatment that could bring me relief. The truth is that most people with CSU are still not receiving the correct treatment, which really helps them to live a peaceful and normal life. What we see are many people still testing hopeless things and living days with symptoms that prevent them from performing their activities well.
I was always afraid of relief from the disease, because it almost always had to do with the use of a medication that caused severe side effects, such as corticosteroids. It was almost like a dream to think that there would be a plan B outside of the symptoms or relief that was harming me. In fact, I had already given up. I felt at that moment that I thought nothing and no one could really help me. Research shows that the lack of knowledge about CSU is so great that 67% of patients have given up seeking medical help and the majority believe that doctors can no longer help them1. And it was exactly like that with me.
The good news is that everything changed in July 2016 and, since then, I have been undergoing treatment that has helped me get well. I remember that right from the start I could see how much better my life was, and it was even strange not to see myself with symptoms anymore. I often joke that my life with symptoms is much longer than without them, so it was really like living a new life.
I was able to resume my list of activities and interests, que antes com sintomas diários era inimaginável ser possível. Quando ia passar em consulta com minha médica, geralmente estava com o UAS7 com pontuações altíssimas e sempre com comentários e fotos anexados. Não demorou muito para que, logo após iniciar o tratamento, eu nem UAS7 mais preenchia. Sempre – sempre! – era zerado. Era quase como viver um sonho!
Cada etapa da minha nova vida – ou melhor – da vida de verdade que estava recuperando, sem sintomas, era uma alegria nova. Como, por exemplo, When I stopped using corticosteroids for good. I was really grateful to notice that I was now getting back into the natural flow of things.
Many people do not believe that there is really success in treating spontaneous chronic urticaria, but the truth is that it does exist, and I am proof of that. It's been more than 3 years living without symptoms and managing to complete tasks and dreams that were previously left behind. In fact, research shows that 92% of people with CSU can live without any signs or symptoms of the disease when they receive appropriate treatment2.
Muitas vezes, o isolamento e a falta de informação correta causam desespero em relação à perspectiva da doença. Quando eu decidi criar o 3000dias, eu ainda não havia encontrado um tratamento que correspondesse à minha necessidade – como sabem, each body and case requires a specific treatment. And, after a few months, I finally got to what worked for me. When I discovered that this existed and that I was actually getting well, my mission with 3000days it started to make even more sense, because I would like everyone to have the correct knowledge about the disease and, thus, get rid of the affliction of believing that there is nothing more to help them.
The despair that comes with realizing that nothing helps us is completely understandable. But today, the good news is that I and many other patients were able to resume our days without symptoms and also our normal lives. O CSU treatment (spontaneous chronic urticaria) aims to completely control symptoms, allowing the patient to live with quality and resume their daily activities without losses or limitations.
Eu estou vivendo isso e é maravilhoso 🙂
References:
1. Maurer M, Staubach P, Raap U et al. ATTENTUS, a German online survey of patients with chronic urticaria highlighting the burden of disease, unmet needs and real-life clinical practice. Br J Dermatol 2016 Apr;174(4):892-4.
2.Kaplan AP. Therapy of chronic urticaria: a simple, modern approach. Ann Allergy Asthma Immunol. 2014 May;112(5):419-25.
**Post sponsored by Novartis
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