CHD advocate/patient. Founder of Zipper Sisters: Women with CHD. `I was born as a "blue baby" with several complex congenital heart defects. I've endured 3 open-heart surgeries, countless cardiac catherterizations and procedures. I will never outgrow my CHD, as there is no "fix" or cure. Congenital Heart Disease is greatly misunderstood, misrepresented, and grossly underfunded although it is the most common birth defect! 1 in 100 babies are born with CHD; about as many as are born with Autism. More children die from CHD than all childhood cancers combined, but yet, we struggle to be recognized. I've been very lucky in regards to my own health, but I can not stand idly by while children and adults die from CHD every day! I have witnessed so many beautiful people losing their battle because nothing further could be done for them. Research and funding is limited, so we find ourselves being told again and again, that there's not enough data or research to treat our progressing disease. Although acquired heart disease receives hundreds of millions of dollars in funding, CHD does not! Due to the misconceptions about CHD, the general public usually assumes we are like acquired heart disease. However, CHD is a completely different specialty, and we need to see a different type of (specially trained) cardiologist. Currently there are only a little over 300 of these type of specialists in the USA, and there are over 2 million adult survivors, with the number increasing every day! Surgery, diet or exercise is not a cure for CHD. CHD patients want to flourish and live life to the fullest. We need our own voice. When I see a patient inhibited by physical issues/limitations or anxiety, depression or medical PTSD, I want to give them a sense of hope and community. I want to see vast improvements in treatment options, research, and quality of life! I have lost several friends and many members of Zipper Sisters to CHD. There are no words to express the grief of seeing one of your comrades falling in battle. As a little girl, I believed that by the time I grew up, CHD would be eradicated. But here we are, still struggling to make ourselves known to the rest of the world! In 2012, I saw a great need for women with CHD to have a private, safe place to talk about their issues and concerns. Many women with CHD were frustrated or intimidated about opening up due to unsolicited advice or judgement. It's extremely difficult to talk about self-image issues, child-bearing, birth control, relationships, and finding the right care in "mixed company". In 2012, I created a sisterhood of women with CHD. I based my idea of a "sisterhood" on my college sorority days. I started with a few of my close friends with CHD, and we now have over 2000 members from all over the world! We are growing every day! We screen each member before they join, to keep the group safe and genuine. I'm very proud of our accomplishments! We help our members find the right care in adulthood, we listen to them during health crisis, we inspired them to seek the most out of life, and most importantly, they know they are not alone! I'm also very involved with The Adult Congenital Heart Association, and anyone who meets me knows that is my #1 passion. I began lobbying in 2012 on for The Congenital Heart Futures Act, and have been on Capitol Hill 7 times! I also created a yearly event in 2012 with the St. Louis Cardinals called Congenital Heart Day at Busch Stadium that brings together patients and family for awareness during game day, and the next year I created The Great Pumpkin Project to bring Halloween fun to patients at the Heart Station at St. Louis Children's Hospital, my "alma mater". Since Halloween is my favorite holiday, I wanted to make sure heart kids that are hospitalized don't have to completely miss out on the day! Perhaps it was a natural transition to become a leader for ACHA's outreach affinity group, because I encourage advocates to come up with fun and unique ideas to promote awareness!
A sisterhood of women who grew up facing the challenges of multiple heart surgeries, hospitalizations and procedures, who want a safe place to talk with other women who have the same experiences, to help cope with issues such relationships, depression, body-image issues, family planning, surgery in adulthood, and finding the right care. — Lena
Since it's creation in 2012, Zipper Sisters: Women with CHD has provided support to women in a very misunderstood, under-represented lifelong chronic health condition. Its founder & admins all have had multiple heart surgeries since childhood, and they still face the uncertainties that come with Congenital Heart Defects along with its members. — Lena
Lena has singlehandedly united the congenital heart defect (CHDs)community across the world. As a person with a CHD, I grew up lonely -that no one could understand my world - Lena changed all of that for me. Her work with Zipper Sisters and ACHA has empowered every single person affected by CHDs. She's too humble to admit it, but she is our hope — aliza
I’m a Patient Leader