2014 Myheartsisters.com update
PPCM It's been a huge year and a long time coming with an update. I hope everyone is doing well.
The website is now ranked on page one for terms such as PPCM, Postpartum Cardiomyopathy and Peripartum Cardiomyopathy, a dream come true which means that anyone googling those terms is able to find us easily and get support, connect with other heart sisters, find information and read the all-important PPCM stories. There are lots of new members so please remember you can visit the site www.myheartsisters.com and go to the LOCATE page to find a heart sister near you on the map or use the MEMBERS or STORIES page. We are working on private messaging from the site but for now, you will need to look in your OTHERS folder in Facebook for messages from other members. To find a member you would like to contact, you can search by name, on the MEMBERS page which will link to their FACEBOOK page, where you can message them.
Noelle and I have been honoured to review the Cardiovascular Disease Pregnancy Signs & Symptoms infographic draft and we are excited for you all to see this when it is done. The task force aims to develop a toolkit for clinicians about cardiovascular disease and pregnancy. Much work had been done by Christine H. Morton, PhD, Research Sociologist/Program Manager, California Maternal Quality Care Collaborative, Stanford University as they interviewed and analysed many heart sisters maternal health care experiences and they presented their findings at the AWHONN (Association of Womens' Health, Obstetric & Neonatal Nurses) conference in Florida in June 2014. Thank you to those who participated in the interviews and interviews will be continuing this Summer, pending funding. Thank you also to all the heart sisters who have contributed stories to the website as these are very helpful and can be analysed and categorized. So far "analysis of women’s narratives highlights missed opportunities for timely, potentially life-saving, diagnosis of PPCM; the significance of valuing women’s knowledge of their bodies; the importance of positive interactions with maternity clinicians; and the critical role of ongoing social support throughout treatment and recovery." We hope in the future, that PPCM will be better diagnosed so that more lives are saved and women are treated earlier. According to Temporal Trends in Incidence and Outcomes of Peripartum Cardiomyopathy in the United States, nationwide population study (2004‐2011), estimated that the disease occurs in 1 every 968 live births in the United States. It seems to be a lot more prevalent than these new figures suggest.
Noelle has been busy raising awareness about PPCM throughout all of Chicagoland. where she attends six Go Red For Women Ambassador meetings a year, and has recently received a donation from Tiffany's for Go Red Luncheon, to raise money for the American Heart Association. This Fall she humbly accepted the role as " 2015 Go Red For Women Featured Survivor". The AHA/Go Red will be using her story, pictures of my family and even a short film presented at the Go Red Luncheon February 2015 to help personalize the campaign against Women's Heart Disease. Some links to the social media presentation of "Noelle's Story"........
Heart sister, Elisha Bowers was interviewed and featured in the News. http://www.ksl.com/?nid=1009&sid=32810297 . A great piece that raises awareness about PPCM.
Another PPCM article featured on a popular online website, http://www.iamnotthebabysitter.com/every-pregnant-woman-know-ppcm-save-life/
We will be continuing to develop the website in 2015.
2014 was a big year for us, as we welcomed a new baby into our lives in July 2014. I finally managed to write about the experience http://myheartsisters.com/stories/show/jasher-s-story . It's almost a novel in itself but I documented a lot of things from diagnosis to recovery to future pregnancy, in the hope that my experience may help others.
We are looking forward to creating a section for HEALTHY RECIPES and fix some functionality issues in the site. My apologies to heart sisters who sent me photos to be included in the site. I am not up with the technical reasons but we had some programming issues that have not allowed me to put them up but will hopefully get around to resolving these issues soon. Feel free to message me at firstname.lastname@example.org if you have any suggestions, feedback, problems, etc with the website.
KEEP IN TOUCH
Let us know what you are up to and if I have missed any PPCM news, feel free to let me know. My memory can be a bit flaky at times, juggling so many things, You can also login to the website and update your story at any time.
My best wishes to all my heart sisters, and hope you all have a blessed and healthy New Year !