Patient Leader Perspectives: Connection and Support

Last updated: October 2022

Connection and support can make all the difference when living with a rare condition such as chronic hives. We asked our patient leaders if they have been able to find connection and support by meeting others with chronic hives, and if it impacts their quality of life.

We found, through their experiences, that connection and support can provide comfort, but it can also highlight the strong need for more research and answers.

Connection and support for chronic hives

Reply from CJ

In the beginning, I found little community support in person or online. I felt very alone at the time. In my experience, however, once I started meeting other people with type 1 diabetes, I found that many of them had skin issues before their diabetes diagnosis, such as chronic hives. Knowing I wasn't alone nor crazy was so comforting.

My quality of life has positively improved as a result of having community support. Now that I can share what I've learned with others going through a similar experience, I am able to positively impact the lives of others.

Community Poll

How much do you share about life with chronic hives with family and friends?

Reply from Andressa

I have joined different chronic hives groups via social media, and at a certain point it made me sad instead of grateful. I just couldn't see children suffering. The parents are doing EVERYTHING to make their kids feel better. The idea that a child is going through the same thing like I am, is just unfair. So many parents are having questions, feeling scared, sick, because they don't know what to do and how to help their kids.

Community support has shown me the great need for research. Because there are too many people suffering daily without knowing how to proceed further.

Community Poll

How well do you feel you manage your chronic hives?

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Do you typically get extra questions about your health during the holidays?