The FH Foundation Community Forum

When I started this blog in 2011 (http://livingwithfh.blogspot.com/2011/02/welcome.html), there was little to no information about Familial Hypercholesterolemia online. I knew no other people with FH outside my own family. I had no knowledge about genetic testing for FH and about the two forms of FH (the Heterozygous, more common form, and the Homozygous, less common and more severe form). 

I started this blog out of a need to communicate with others but also from a desire to share my journey with others like me that were perhaps just being diagnosed and did not know what to expect. 

The world has surely changed in the past 9 years! If you follow this blog, you know about my journey, from trying different medications to succeeding and also failing to keep my numbers down, but always going back to the drawing board and always hoping. You also know about the complications brought about by HoFH, about my advanced heart and vascular disease, about my massive open-heart-surgery, ny heart attack, and my recovery. I have gotten lots of feedback from people that this blog helps them through their journeys and gives them a sense of community while assuring them that they are not alone. I am forever grateful for that. 

Besides people like me who share their stories now more and more often, besides the advancements in medicine and the fact that this disease is not as new and uncommon for doctors to spot anymore, there is one other entity in the world of FH that is supporting people like me, and that is The FH Foundation (https://thefhfoundation.org/). Founded in 2013, two years after I reached out a hand towards the world with this blog, it has helped lots of people get diagnosed and shed light into what the possibilities are. They have made available lots of medical resources, untangled the often hopeless mess of health insurance enigmas, and have kept us abreast of the most recent findings and progresses in the world of FH. But more than anything, perhaps, they have created a community where FH individuals don't feel alone anymore and where they can learn from others' experiences and exchange ideas and find support. 

Once a year they organize a Community Forum, usually moderated by a medical professional, where they interview individuals with FH who come from different backgrounds and have different forms of FH. I was lucky enough to be one of these individuals this year and be accompanied by three other amazing panelists who told their families' stories and selflessly shared themselves with the world. These are remarkable stories of people coming from every walk of life, showing the truth about this disease, the struggles, and the triumphs that it brings about every day. 

This one-hour interview is worth watching if you are looking for more first-hand information about what life with FH is really like: https://thefhfoundation.org/fh-community-forum?fbclid=IwAR3YO4Epq-Cs42sALUBf8Ru7wZlB4EiTV9VaZt43oxzWCQmKFRWiMOq53tk 

**There is a registration form, but you can decide whether you allow The Foundation to send you more information or not. 

Much health to everyone!