Building Connections and Communities

We all need help sometimes. There are times when we need help with something simple like figuring out how to spell a word correctly, or how to figure out that weird-looking algebraic formula. Then there are times in life when we need a lot of help—when we are feeling sad or lost and need a loved one to help pull us (emotionally) from the rubble.

Because of my CHD, I find that I have several moments when I feel low, but am fortunate enough to have not only supportive friends and family members, but also have great resources at my fingertips to help answer any outstanding questions that may come with my CHD. I recently joined a group on Facebook for women with CHD, my zipper sisters. Before meeting this group of incredible women, I never realized just how many other women there were out there experiencing the same trials and tribulations that I go through every day. It’s important to remember that we are not alone.

There’s a theory called “six degrees of separation” that says that everyone in the world is connected to one another by no more than six acquaintances. If perhaps you’ve never heard of the theory, there’s a parody of it called the “Bacon Number.” You can go to Google and type in any celebrities name plus “bacon number.” Google, in its infinite internet wisdom, will tell you what the degree of separation is between that celebrity and Kevin Bacon.

I feel like we need to have a “Heart Number” where people can see just how close they are to someone who was born with a heart defect. Everyone is so busy in their day-to-day lives that they don’t necessarily see what’s going on around them, or what’s happening to the people in their lives.

Through social media, we’re able to find out how closely we’re connected with one another. That’s the great thing about the Adult Congenital Heart Association. Through it, we are able to build communities, form friendships and strengthen bonds. Each year, ACHA partners with The Children’s Heart Foundation on Congenital Heart Walks. I am co-chair of the San Francisco Bay Area’s fourth annual walk on June 15, and together, we can help make a difference in the lives of everyone affected by CHD.

Each year, approximately 40,000 babies are born with some form of a congenital heart defect. That number is staggering. We haven’t found the magical formula to stop this number from continuing to grow, but we have the technology and the knowledge to help these babies grow into adults. Each year, the number of adult congenital heart patients grows and statistics show that we’re living further and further into adulthood.

If you’re wondering how you can help, there are a lot of ways you can get involved:

1. Research. Learn about the defects that your friends or acquaintances were born with. Ask how we feel, ask if we need help. Get to know the obstacles we face, and the ways we overcome them as individuals. A lot of times, you’ll find that our perception on life is much different from yours. Learn from it. Knowledge is power, right?
2. Advocate. Spread the word to your family and friends. Make sure everyone in your circle is aware of CHD.
3. Participate or volunteer for an event. Volunteering takes nothing but your time, and gives back so much more in return. Ever volunteered for a charity and felt that warmth spreading through your chest? That’s an incredible feeling and one to be cherished and shared with others.
4. Donate. I know some of you may be thinking that you don’t have any money to give. We all understand that times are tough, but in return, I challenge you this—take that $5 you spend on your fancy morning coffee. Donate that just for today, and challenge your friends to do the same. If you can get even 100 friends to take you up on that challenge, well, the math is simple but the results are incredible.

For more information about Congenital Heart Walks or to volunteer, click here.