Maybe you arrived here at 3000 days at this exact moment, and as a result you have a lot of doubts, not even knowing where to start. In this post I want to help you know what changes in your life now with your diagnosis, and more than that, I want to give you some tips on how you can live well, even with the disease.
First of all I need to say: URTICARIA IS NOT FATAL. In other words, it is not a disease that can worry you in that way. But without a doubt, in the case of UCE, which is the spontaneous type of urticaria, you feel very apprehensive about your appearance, as the symptoms are frequent and don't appear at all. It can definitely be at any time.
So let's go: grab a pen and paper and take notes, let's go to the list of tips:
1: Medical follow-up
You must imagine, the medical monitoring It’s the beginning of everything! It is necessary to prioritize a constant routine being accompanied by a specialist doctor. Specialist doctors are allergists or dermatologists who will be able to take care of urticaria, they are the most recommended for this.
This monitoring is necessary because CSU is a chronic disease and every type of chronic disease needs continuous care.
In this case the doctor patient relationship is more than essential! Because through this, the patient will be able to explore more about how they are feeling, the results of the treatments and thus have their disease under control as soon as possible.
2: Information and support
Just the fact that you are here already shows that you are on the right path!
Many people who live with CSU – chronic spontaneous urticaria – experience the despair of the symptoms and feel weakened for not having knowledge about the disease. That's why information and support is so important.
As you know, the path to diagnosis is still very complicated, and the lack of information only harms all of this.
Therefore, seeking support and help from patient associations, blogs and other areas of action focused on your disease can be a relief on difficult days. Correct and reliable information combined with a support network willing to listen to you and collaborate with you on this journey is the ideal combination you need to continue living well, even with UCE.
3: Follow YOUR treatment
The tip here is about follow your path and don't compare yourself. When we receive a diagnosis of the disease and find a patient network to engage with, it is natural for us to create expectations about our improvement from other people's reports.
“So-and-so needed 2 years of this treatment and he was fine”
“Beltrano didn’t even need to reach this stage of treatment”
This is all very valid! However, the tip here is for you follow YOUR treatment and do not compare your improvement. Each person is a complex organism that responds differently to each thing. That's why following recipes or sharing what works for you with other people is not the recommended path. Always remember: any and all treatment recommendations must only be made by a medical professional.
4: Have a healthy diet
One of the main things that people immediately think about when they receive a diagnosis of CSU is: what will I need to change in my diet? There is endless confusion about hives and allergies, and always what we eat ends up being the villain number one. But we need to put an end to this myth soon: CSU is a disease completely free from external relations, there is no proof of cause and effect, which makes it a spontaneous illness. So rest assured: it’s not what you eat that’s to blame, It is not your fault!
Regardless, there is one tip that is very worthwhile: review your eating habits and trying to have a healthy diet will only do you good. Although it won't rid you of the symptoms of CSU, it will improve your life in many other ways.
5: Be honest and seek help
Many people who live with CSU feel emotionally fragile and it is no surprise: chronic spontaneous urticaria is a disease characterized by symptoms that can appear at any time and on a daily basis and this significantly impacts the common routine of activities.
The tip here is about you be honest with yourself and seek help if necessary, breaking the psychological support taboos, for example. Yes, psychological support can be indicated for patients with skin disease and this is not a weakness.
They exist research and data that prove that UCE can cause various emotional symptoms and that's why we created a week dedicated to content about this here at 3000dias. It's Psychology Week, click here to find out more 🙂
6: Keep your UAS7 up to date
Do you know him hives symptom diary? It is a control questionnaire for you to mark the intensity of symptoms and itching that you experience daily. This questionnaire is very useful and is used worldwide. It's called UAS7, which means: Urticaria Activity Score, and the 7 means it will be used for 7 days. Every week you will have a score reporting how your illness was, both in terms of number of lesions and intensity of itching. The marks we make on it range from 0 to 3. Where 0 is the absence of any symptoms and 3 is when things are bad.
Having this control is important, because it serves as a guide and history for your medical appointments and the evolution of the disease.
You can download yours here.
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