Kana’s Story: Vasculitis Patient Conference

Looking back at my experience during a medical conference, I remember a wonderful lady with a very specific disease. Her name was Emily (not the real name for privacy) and the disease is called Behcet’s Disease. She was looking for someone who knew a person with Behcet’s or someone who had the same disease she had been fighting for several years. “Do you know anybody with this disease?” she asked me, pointing to her name tag. At the time, I knew about Behcet’s but I had not yet met a person with the disease.

Behcet’s Disease falls under a group of diseases called vasculitis, a very rare condition causing inflammation in blood vessels. Some symptoms include mouth and body ulcers and inflammation of the eye. When I met my new friend, Emily, I did not see a patient with a disease nor did I see any aching symptoms of the disease. I just saw Emily. She was beautiful, smart, caring, and determined to make connections with those who experienced the same things she had experienced.

I met Emily at the 2016 University of California Los Angeles Vasculitis Patient Conference on April 30th. Specialist came from everywhere to share latest information with people and families who live with rare diseases. As I attended the conference, I listened and heard what people and families with rare diseases wanted: they wanted information and they wanted it in a clear concise way that they could understand. People and families have a right to engage and study information about their disease. They also have the right to seek and choose a variety of treatments. People with rare disease hold the weight of many things: treatment, every day activities, personal lives, family members, careers, and so much more. When balancing these factors, access to information should not hinder their growth as a person but allow them to live more knowledgeable and holistic lives.

“[They] are fighting their disease, seeking more information about their disease, and looking for someone to understand.”

2016 University of California Los Angeles Vasculitis Patient Conference

As I listened at the conference, I heard some common phrases from people with Microscopic Polyangiitis: “I am registered in patient organizations, but everybody is very far,” “I feel isolated, I feel alone,” “I have been misdiagnosed for a long time,” and “I have received wrong medications.” Reflecting on what I heard, I learned that many voices are not heard, people want community, and people want clarity and consistency. People with rare diseases are fighting their disease, seeking more information about their disease, and looking for someone to understand them.

People are resilient and strong; people need community; and people deserve understanding and information.

Currently, I am the Community Engagement Ambassador with Rare Is Special. In my role, I often look back at my conference experience and I remember the important things that I have learned: people are resilient and strong; people need community; and people deserve understanding and information. Being mindful of these things, I work to connect special people with other special people and hope to provide clear, concise, and accessible information to those with rare diseases.

Author: Kanako Nishino, Community Engagement, Rare Is Special

Kanako has worked as pediatric nurse in past in Japan and has provided health care to children affected by rare diseases. She has been involved in the development of Rare Is Special.

* Acknowledgement: This article is edited by Diode de Dios, Rare Is Special
Copyright © Rare Is Special, USA

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Rare Is Special aims to connect people with rare disease with others with the same disease as well as researchers and doctors working in the field. One way to do so is by publishing people’s stories and experiences. By contributing your story, you will be able to reach and inspire others with the same disease and motivate researchers and scientist who do work in the same rare disease.

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