A Hopeful Letter to Those with Urticaria
Last fall, I attended the 25th European Academy of Dermatology and Venereology (EADV) Congress to learn about the latest research about urticaria and provide an inside look to those following along on social media. While I also attended the congress in 2015, this year was especially important to me because it coincided with Urticaria Day 2016. What better way to encourage those living with urticaria to #NeverGiveUp than to live-tweet the thoughts of some of the greatest minds in dermatology? I know it can be a challenge to remain hopeful about your urticaria, but consider what one EADV attendee shared with me: “We have a better understanding of tools and the patient experience than we did 10 years ago. To our patients out there, don’t give up on us!” This inspired me, and my hope is to not only inspire you – but to give you the same sense of optimism for the future that this amazing experience has given me.
Understanding what is important
One of the greatest takeaways from my experience was the importance of raising awareness. This seems like a given – we all want our friends, family, coworkers and medical professionals to know and understand that this is not “just hives.” It’s a lot more than that. The disease is often misunderstood or trivialized, which not only hurts us as those living with it, but it also diminishes our voice as a patient group and our chance of being heard.
Christine Janus, CEO of the International Alliance for Dermatology Patient Organizations, understood this, stating at EADV that “when the patient voice speaks, we want people to listen. People need to listen.” But as patients, we also know a single voice isn’t always heard. This is why becoming involved with a patient organization is a great way to unify and amplify the patient voice, raise awareness and support each other.
I met many wonderful people at the congress from different patient organizations, but alas, there were hardly any support groups dedicated exclusively to urticaria patients. I felt a bit at odds with this, even at the largest dermatology congress in the world, and immediately thought “How do we change this? How can we bring more awareness to urticaria?” Urticaria is not just itchy skin, but a debilitating disease that needs to be better understood. It’s important that more people know about it – so researchers, physicians, community leaders and more will be inspired to help create a better future for those living with it.
And that’s where you come in. If you are comfortable doing so, you can amplify your voice by joining an advocacy group, or perhaps starting a group. Connecting with others on the Skin to live in Facebook page is a great place to start, and social media makes it easy to share important and insightful information with friends and family.
A day for me, and people like me
As I mentioned, EADV overlapped Urticaria Day, a day dedicated to raising awareness and changing public perception of urticaria. It’s held annually on 1 October, so keep an eye out for it next year!
This year’s rally call was to never give up. When I asked Prof. Marcus Maurer – one of the leading doctors in urticaria research – about this, he emphasized that both patients and doctors can often feel discouraged in their efforts to determine a diagnosis or lifestyle plan for urticaria. And although unfortunate, it is not all that surprising. Sometimes it takes years for a diagnosis. Other times, you may find yourself in bizarre, sticky situations in an attempt to help your skin (read Luke’s experience with kokum and you’ll know what I’m talking about). Doctors are not immune to the challenges that accompany urticaria either, but they continue to strive for a better future for us. When I asked Prof. Maurer why he continues to advocate for urticaria awareness and research, he told me, “Patients must control this disease; the disease should not control the patients. Do not give up because we are not giving up.”
And there it is, friends. That was the most powerful, important sentiment I heard at EADV. Those words give me hope for the future. In fact, there are urticaria specialists and advocates all over the world who are here to support us. For example, have you ever heard of GA²LEN, the Global Asthma and Allergy European Network? This international network of allergy and asthma research centers aims to reduce the burden of allergic diseases and to improve the health of patients with allergic diseases. You can learn more right here on Skin to live in.
It’s no secret urticaria can have a profound impact on your life, and your vision for the future. But my experience at EADV reminds me of how important it is to envision a future with endless possibilities. Don’t hold back, live your life. Ask questions, increase awareness. Have hope. And of course, never give up!