Misti Blu Day

Misti Blu Day, 38, Wolff-Parkinson-White/Ehlers-Danlos Syndrome

How would you explain Wolff-Parkinson-White/Ehlers-Danlos Syndrome to a child?

My name is Misti Blu Day and I am 38 years old. I was born with a congenital heart defect called Wolff-Parkinson-White (WPW) syndrome and a genetic connective tissue disorder called Ehlers-Danlos syndrome (EDS). These conditions have caused a lot of setbacks throughout my life. 

WPW had my heart rate up to 250 beats per minute, essentially just fluttering or quivering. I had 4 separate cardiac ablations procedures to correct that but they were unsuccessful and inevitably landed me with a pacemaker. My heart rate would stop, pause, plummet, race, skip and just go wild on a daily basis. The pacemaker allowed me to have the safety net to take meds to lower my heart rate while preventing my heart from stopping or going too slow. This has allowed me to live a more normal life… and also to simply allow me to continue living. 

EDS has created many health challenges as well, being a systemic disorder. This means every organ is affected, as the body is 30-40% made of connective tissue. A genetic mutation caused an error with the production of my connective tissue, causing it to be overly stretchy. My heart valves were affected, landing me two open heart surgeries. I had one at 26 to repair a tear in my aortic valve. My second was for the replacement of that valve for a cow tissue valve in May of last year. EDS had landed me many other health conditions and surgeries. Digestive issues are very common with EDS patients, as well as cardiac. The nervous system is also affected, which controls blood pressure, heart rate, temperature regulation, digestion and everything else your body automatically does.

What would you want the world to know about Wolff-Parkinson-White/Ehlers-Danlos Syndrome?

It’s important to raise awareness on EDS and WPW and other rare diseases because the health and wellbeing of those who are undiagnosed are at risk. Proper diagnosis plays a vital role in preventing catastrophic health issues, management of health conditions and mental health. I did not get diagnosed with WPW until I was 19. This meant I spent my life since birth with my heart racing. I did not get diagnosed with EDS until I was 33 and fighting for my life. I spent my entire life before having a diagnosis being dismissed, medically neglected, living in pain, misdiagnosed and told it was in my head. The more I have learned about my diagnoses, the more I have learned to improve my quality of life and how to advocate for myself (which for some can mean life or death).

What does it feel like to live with Wolff-Parkinson-White/Ehlers-Danlos Syndrome?

Living with these conditions are not for the faint of heart. I won’t sugar coat anything. It is absolutely dire to put your mental health on the forefront as being a warrior is not easy on the mind. Medical trauma and PTSD from major or life-threatening illnesses come with a price and it is not talked about enough. Educate yourself on your health conditions. Ask questions. Get second opinions. Find support groups.

What brings you joy?

What brings me joy is something that has changed over the years. Being in my late 30s, what brings me the most joy now is shifting my perspective and learning that not everyone deserves access to me. Setting boundaries and reducing my circle to people who are supportive and bring peace to my life. Stress management and lifestyle has a major effect on your health so fine-tuning what you choose to allow in is a powerful and protective tool. The people in my life now are safe and supportive. I am grateful and feel loved and in a healthy environment for once. The last thing anyone with chronic illness needs is a toxic environment.

I have also learned to incorporate things that bring me joy with having a therapeutic benefit, such as physical activity. Many people with my condition(s) are wheelchair bound. Building strength has helped me to prevent deconditioning and injuries. It’s also fun, trades my anxiety for energy, and has a positive result. I love hiking, kayaking, running and most sports. I haven’t always been good at these things and most of the time my heart or body has prohibited me from participating in these activities. However, that only makes me enjoy them more while I can. I love a good challenge. I also love education and did premed for my undergrad, which definitely helps with advocating for rare diseases. 

Neither EDS or nor WPW have a cure and most doctors have never heard of either, or know very little about them. Being proactive and educating my local fire departments and hospitals gave me the peace of mind that I would get the care I need if I end up in my local ER. I do my best to focus on living a fulfilling and mindful life. I celebrated everything and try my best to live each day like tomorrow is never promised. If it weren’t for modern technology I would not be here so I like to take advantage of the extra chances I’ve gotten.