I’ve faced many health challenges in my life: At the age of 16, I was diagnosed with two gastrointestinal conditions and Common Variable Immunodeficiency, an inherited disease that makes me susceptible to infections and requires a life-long intravenous immunoglobulin therapy that I receive several times each year. One of the biggest challenges for me through my diagnosis and disease management was finding a community I could turn to for support, resources and to connect with over shared experience.

After reaching out to several different organizations, I was connected with the Immune Deficiency Foundation (IDF), an organization that aims to improve quality of life for people living with primary immunodeficiencies like myself. They have played an important role in supporting me on my journey through my condition. I’ve attended several of their local and national conferences and events, which has had a very positive impact on me and my physical and emotional well being. I’ve met new people, made new friends and learned from experts with a lot of knowledge of primary immunodeficiencies.

Living with a rare disease and being immunocompromised during a pandemic brings a lot of frustration and anxiety during these times, especially when dealing with people who don’t take health seriously.

My job requires me to wear a mask, face shield, goggles and we have new cleaning protocols. I am lucky to have a best friend who also lives with primary immunodeficiency and works in a clinical setting who understands my fears and can offer support.

Although the pandemic has impacted the primary immunodeficiency community’s ability to interact with the in-person, it hasn’t stopped us from connecting with one another virtually. Thanks to technology, many of us have access to devices and software that allow us to easily communicate with one another while apart. IDF has hosted several virtual meetings over the past few months that have allowed us to visit more frequently over Zoom. It’s been a very positive experience and has made my time at home and away from others easier. Just recently I met another person living with the same condition as me virtually and we had the chance to share our stories and experiences with one another.

Connecting with IDF

These current circumstances have also created opportunities for people to attend virtual events they previously may not have been able to attend in person. Each year I participate in the IDF Walks, which take place in several locations across the country. This year, IDF is hosting all walks virtually, meaning people can participate from anywhere and log their walks online for the community to see. I’m looking forward to representing my local chapter this year and connecting with my walk team, even though we’re all apart.

In many ways, getting involved with the rare disease community is easier than ever in this current environment. I encourage those reading this blog to seek out opportunities to connect with your community and the greater rare disease community in this new virtual reality we’re living in – it can lead to new connections, resources and support that can last long after this pandemic is over. To everyone in the rare disease community, we are zebras and we are stronger together.

 

About Laura Bekier

Laura Bekier is a physical therapy aide living in New Jersey. She lives with Common Variable Immunodeficiency, a rare disorder that impacts her immune system. To learn more about primary immunodeficiency (PI) and to get connected to the community, visit https://primaryimmune.org/.

 

 

 

 

 

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