When I developed PPCM in July 2011, I trawled the internet for information about PPCM and found a lot of conflicting information and out of date websites. It was confusing!! When I left hospital, I believed that I had a 50% chance of dying in 5 years or recovering completely but understanding PPCM and how it happened was very difficult because it was so unlike any other forms of heart disease. It was very difficult trying to reconcile how I could go from healthy to almost dead. I read a number of books by cardiologists who also used holistic methods to help patients recover from heart disease and one that wrote a whole book on the benefits of exercise to heart health, in particular the role of Nitrogen Oxide in the body.
I read a number of PPCM stories that I stumbled upon on the internet, and it was good to see happy endings. I remember reading the story of Mandy Heibel, but her blog stopped at a certain date after she relapsed and I remember searching through the internet to see if I could find any information about whether she was still alive. I found the site amothersheart.org and by chance discovered why no one seemed to be posting on it anymore. Everyone had moved across to Facebook groups and part of my reason for joining was to find out if Mandy was still alive. I didn't know what to expect, joining the Facebook group. I half expected it to be as empty as the forums on amothersheart.org but was pleasantly surprised to find a vibrant, group of compassionate women who were survivors of PPCM.
As much as I have enjoyed connecting with other heart sisters through Facebook, I often find myself wanting to know more about a heart sister; what her story is, where she lives and how she is doing now. I came up with the idea of a website that would work with Facebook that would allow heart sisters to add a location to a map, add and update their story, and comment on stories and articles. I also wanted to write about PPCM in everyday language, so that my family and friends could understand heart failure in pregnancy. So, I discussed it with my programmer/husband and although he had never seen it done before, he started work on his first Facebook application. We did not realize the complexities of the task and how many months it would take to complete or the frustrations we would have as Facebook developers. Facebook may be a worth a hundred billion dollars but they certainly know how to design a business to be Faceless. When there are problems with documentation or issues with functionality, there is no email, no phone, and no contact. Not unless you are spending a small fortune in advertising.
It has taken us months to develop myheartsisters.com and still there is more work to be done to make it even more usable. We are looking forward to putting in a keyword search function across stories and articles and better layout for listing members.
Despite our gripes with Facebook, the ability to use Facebook likes and shares to spread a message is a great opportunity. Combining it with pages that can be indexed on search engines, means that sharing is not limited to Facebook and we have the best of both worlds, when it comes to raising awareness of PPCM: search engine traffic and social media traffic. The problem with Facebook is that it is very "in the moment" and if you are not there at a time when a certain topic is being discussed, you will never find the topic again and unlike forum posts, Facebook does not index well on Google, especially if the pages are in private groups. This means a wealth of valuable information is locked in Facebook groups. Unless you know that these groups exist and you have a lot of time to read the posts everyday, important information will be missed.
The Heart Sisters Map
The locations page has a map, where members can add their location. This will make it easy to know if a member of myheartsisters lives near you or if you are travelling, you can look up members according to location.
Telling Your Story
Each member can add their story to the site. It doesn't have to stop at diagnosis and current EF. Stories can be about anything; how you healed, how you felt, what you ate, your day to day life, your children, where you live. It can be as long or as short as you want, detailed or brief. PPCM is a disease but the stories of who we are, that people can identify with, that will see attitudes change. When people start realizing that normal, everyday women go from healthy to heart failure in pregnancy, then may be the message will get across. PPCM can affect anyone. Medical sites talk about EF, diagnosis, presentation, etc..but our stories of how we triumph over the disease, is something that goes beyond EF. It is the personal journey and struggles that we face, that bring a human face to what is often dismissed as a rare disease. Our collective stories and energy, will raise awareness about PPCM and connect with us with heart sisters throughout the world.
We have also dedicated a space to the many women who have died of PPCM, whose stories have been lost in time. We hope their partners or relatives will join myheartsisters.com and tell their story and how it has affected their families. It is incredibly sobering to read about women who have died from PPCM and know how incredibly lucky we are to be alive.
From a personal level, I have found incredible healing from being able to put into words my PPCM story, the journey and what I have learnt on the way. My family and friends can read about what happened to me and in years to come, when my children and grandchildren ask about how I almost died of heart failure, my story will be theirs to share and know. PPCM has changed our lives, our outlook, our relationships and though incredibly traumatic, it has become part of who we are and as we share our story and our skills, we hope that we can make a difference and bless others, as we were blessed in our time of crisis.
Website Content
I have been an active member of the Facebook support groups for several months. It's taken many, many hours of reading through posts, studies, books and asking questions of Dr. Fett to glean a concise and up to date understanding of PPCM. It is my hope that by writing about PPCM in everyday language but with enough detail to satify cardiologists, nurses and other people involved in the care of women in pregnancy, more people will know about PPCM and less women will die from PPCM.
I would love to hear feedback about the site's content, and what improvements could be made.
Share and Change will happen
There is a theory of Six Degrees of Separation, that everyone in the world is connected by six degrees or less to every other person in the world. We have Google and we have Facebook and with the right tools, we can share the PPCM Story, so that the whole world knows about PPCM and someday, there may even be a way of preventing it from happening, when we find out what triggers heart failure in pregnancy in previously healthy women. In 2012, we have the tools to spread the message. All we need is the will to share our stories.
- Go to www.myheartsisters.com and register, add your location and story . Sign up should take you less than a minute.
- Share your story or this site with your friends and family via email, letter or word of mouth.
- Use Facebook likes and shares and ask your friends to share.
- Write to any website relating to pregnancy or heart disease and ask them to link to www.myheartsisters.com
We never know what will happen, until we try. Our job as programmers/writers is almost done. Now its your turn. :)
I am looking forward to reading your stories and putting into context the posts that I read on the Facebook.
Jeanee
About Myheartsisters.com
Myheartsisters.com has been developed to raise awareness about heart failure in pregnancy (PPCM) and provide support for heart sisters through storytelling and friendship. How to Join - Join as a heart sister, cardiologist or relative of a deceased heart sister and add yourself to a map and directory listing.
Read PPCM Stories from heart sisters or read about PPCM Recovery
