Ask the Patient Leaders: Advocacy & Awareness

Advocacy and spreading awareness are so important for rare conditions such as chronic hives. We want to help the general public understand what it is like living with chronic hives. Being an advocate can look different for different people. Some may share their story, some may work to raise money for research, others may bring constructive criticism to the attention of their doctors.

We asked our patient leaders: What do advocacy and awareness mean to you?

Response from Ambre

Advocacy and awareness are so important to me. It’s my passion. To me, it means sharing your story, your journey. Bring light to the condition. Work to improve treatment options, and resources. I really do believe advocacy is important. We absolutely need to advocate for ourselves. Knowing our condition, and possible triggers can lead us to helping others. The awareness of bringing this condition to the forefront, means increased treatment options, research, better access to care, knowledgeable doctors.

Response from CJ

Health advocacy means advocating for yourself or your loved ones to your healthcare team, while health awareness means knowing your health condition so you can advocate for them. Advocacy is essential, especially for chronic hives sufferers who understand how frustrating it is to not be heard or seen before receiving a diagnosis. In any healthcare situation, having the right knowledge and resources will help us get the support and care we need. Hence the need for health spaces like Chronic Hives so we are able to share our personal experiences and raise awareness so others can take control of their health.

Response from Christy

I definitely think that advocacy and awareness are incredibly important, especially for medical professionals. Chronic hives is a rare disease but has a massive impact on the life of the patient. I’ve encountered many medical professionals who don’t understand the scope of chronic hives, or the importance of treatment. I was recently hospitalized for a different condition, and the physicians didn’t order some of my chronic hive medicines because they didn’t think they were that important to continue in the hospital. I had to explain to the doctors why I needed the medication and what would happen if I didn’t get it. I think if doctors were more aware of the condition, they would better understand the treatment and why it’s so important to be consistent. Unfortunately, there are so many rare, chronic illnesses that advocating for the super rare ones are incredibly difficult. For now, I think it comes down to the patient and being able to advocate for yourself when necessary.

Response from Andressa

Advocacy and awareness means a lot to me. It makes you feel less alone and understood. This journey can be very lonely, but my joining the community it gives me hope. Especially hope, because I’m looking forward to be able to get better one day and get rid of it.

It is so important to use your voice when it comes to these kind of health conditions. Because we can change the aspect of it and we can help to develop a treatment plan that can heal ourselves and others.

I believe that advocacy is important because even if we don’t see the numbers, I believe that we are impacting other their lives by sharing our stories.

Vulnerability can help spread awareness, because by being vulnerable you are willing to share things you normally won’t do. You are willing to let others take a look in your life and ask questions. You are willing to be transparent about an uncomfortable situation.