Ciara was diagnosed with Cowden syndrome, a rare medical condition, not too long after getting a thyroid removed, surviving cancer and experiencing heart failure. Loneliness crept in as she managed her multiple conditions. Here she shares her health journey and expresses gratitude towards the Cowden syndrome Facebook group she came across years ago.

A Rare Condition

I have a rare medical condition called Cowden [syndrome]. It is a rare condition that basically means I am missing a tumor blocker. There are not many [people living with Cowden syndrome] in my local area. It can be lonely.

“I’m Thankful Facebook Brought Us Together”

A couple of years ago [as I] was [scrolling through my] Facebook [feed], I happened to find a group for [people living with] Cowden syndrome. This [group] has helped me [in] so many ways. [I now have] wonderful people to listen to me, who I do not [have to] explain my medical condition to. They let me vent and I learn from them. I’m thankful Facebook brought us together.

I have become Facebook-friendly since I have learned there are people out there who understand [what I’m going through]. I also joined a heart failure Facebook group that helps [me cope] with that complicated medical condition [as well]. My Cowden [syndrome] Facebook group helps me [get through] the craziness.

Additional Medical Issues

[Although] my main medical condition is Cowden [syndrome], I [also had] my thyroid [removed] in 1997, lived through cancer and depression in 2000 at the age 25 and had heart failure in 2017. [Since] I had my thyroid [removed] and [experienced] cancer at a young age, finding out about my rare medical condition in 2002 was hard but it was also a strange relief. I [now] had some sort of an answer for my crazy life.

“Find What Works For You”

[Having health issues] can be difficult and lonely. My advice is to find what works for you. Some people need the in-person support group. Others need a therapist to get started. Facebook has helped me. You may need a little bit of all of these.

Good luck in your search.

Ciara Burgess
Triangle, VA
Diagnosed with Cowden syndrome in 2002

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