My First Rare Disease Conference

Recently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora of people attending, including people with narcolepsy (such as myself), physicians who study and treat narcolepsy, pharmaceutical representatives for medications that treat narcolepsy symptoms, as well as loved ones of people with narcolepsy.

It was such a special experience to be able to attend this conference. Not only because I was able to get out of the house for a few days and sleep in a fancy hotel bed – which is very unlike me, as a disabled person – but also because I was able to see so many people that I know and love that also suffer from the same rare disease that I do.

Meeting rare disease friends

I met many online friends who suffer from the same rare disease as I do for the first time. This was my absolute favorite experience from the entire conference. Knowing that we only had a few days to be in each others’ presence before we returned to being online friends again felt bittersweet, but somehow, that made my time with them all the more special.

The pain and comfort of witnessing my symptoms in others

Watching these rare disease friends having narcolepsy symptoms, such as sleep attacks, was both painful and comforting for me. It was painful because I know the struggle of having such an experience. It was comforting because I felt validated, knowing I was not alone in my suffering.

I could see how hard they struggled to hold their heads up and participate while experiencing a sleep attack. I felt myself flashing back to thousands of similar episodes that I have experienced of these intrusive rare disease symptoms.

As a person with a rare disease, it is uncommon to get to see other people struggling with similar symptoms. That’s the basis of having a rare disease – it is rare. We don’t often get to see other people suffering from our rare disease in our day-to-day lives. And many lay people don’t understand my struggle because of it. Having access to a supportive rare disease community has been an invaluable tool in my wellness journey as I learn to live with narcolepsy. It is validating in the best of ways.

Speaking on rare disease topics

In addition to getting to meet people with the same rare disease, I was also able to talk on a panel about my own experiences living with the disease. There are many ways that intersectionality impacts our own diverse experiences of this rare disease.

For example, I am a white-appearing Hispanic person who appears female and is gender-queer and homosexual. These different puzzle pieces of my identity impact the quality of medical care I receive. This is true for everyone within our community. Having the opportunity to put the patient experience at the forefront of the conversation felt dignified and empowering.

Have you ever attended a rare disease conference?

Overall, I feel incredibly grateful to have been able to attend a conference for people suffering with the same rare disease that I do. It was life-changing, in a way. I felt a paradigm shift – perhaps to a more positive and conscious version of the world.

Have you ever attended a conference for your rare disease? If not, what do you think it would be like? What would you expect to gain from your participation? I’d love to hear your thoughts.