'It Takes a Village...' Building a Supportive Rare Disease Village

When you become a parent, people say you will have a village that will be there for you every step of the way. And you believe them.

Yet, for some parents of children with rare diseases, that network of support can grow smaller and smaller each day. Guidance once promised to you cannot be fulfilled because that so-called "village" just doesn't get it.

For some like me, this creates a shadow of darkness, which can lead to depression and sadness among parents of rare children — ultimately leaving us feeling isolated.

When you cannot count on your village to always be there for you

In my own experience of raising a child with a rare disease, my village appears irregularly. There are moments when friends and family are cheering us on with our newest milestone, only to disappear into thin air when the symptoms of our disease get the best of us.

The thing is, no rare disease parent expects their village to truly get it. We just want our friends and family to try to understand. We want them to show up for us, to listen to us, and to offer us hope when we need it the most. However, my reality is that villages in the rare disease space are unpredictable, and families are often left fighting alone.

Over the last 7 years, I have learned that my family cannot be my go-to. Though I love them dearly, they will never understand my life. I often go through phases where I try to educate them but lately, it's exhausting.

Building my villlage

Some of the ways that I have grown my village are through online communities, local support groups, and engaging in the community through advocacy and education. Let's look at the benefits I have found in each one:

Online communities

By engaging in online communities, including social media groups focusing on rare diseases, you can connect with other families facing challenges similar to yours. These communities offer true connections because these people get it. Although this community may not be able to relate to your specific experience, there is almost always something that we can take from one another to make us feel appreciated, understood, and valued.

Local support groups

Many states and counties have non-profit organizations and support groups that focus on rare diseases or special needs parenting. By attending meetings or events, you can connect with families close by who may better understand the challenges you face. You can share what has worked for you and what hasn't. Every state, every county, and every town likely has some resources; you just have to look.

Advocacy and education

Advocating in the community and providing education can be a light of hope for parents and families going through the difficult journey of raising a child with a rare disease and working their way to finding the village they pray for. Actively participating in advocacy and education raises awareness of different rare diseases and creates more understanding for those who do not live this every day.

My life changed thanks to my village

In 2022, I was fortunate enough to meet professionals who inspired me to do more in the community sooner than I originally planned. If it weren't for these amazing supporters, I don't think I would have ever published my website, www.vamp2.org.

Through this website, my life has changed. I have met new friends in the community and in professional fields. These friends cheer me on daily, encourage me to be a better advocate, and support me through life's challenges. Being open is not something I always felt comfortable doing, but through my family's story, I knew we needed to be open for there to be a change.

What are some of the challenges you face in your village? If you had to build your own village, how did you do it? Tell us more in the comments below.