When I first started this blog there were virtually no resources to use as reference for my disease. All I knew is that I have a rare form of Familial Hypercholesterolemia, but at that time I didn’t have a name for it. I knew my dad and his dad had a lesser form, and I knew what that did to them. But outside of my own family I had no resources to learn more about what this disease means for me, in the long run, and what are all the available tools where I can learn more about it, or learn more about managing it. More than that, I never knew whether my fears and my apprehension was mine alone, or those feelings were normal, as we are trying to understand this disease. Most of my doctors were themselves in the dark about what it means and what to do with it. Fast forward a few years later, I found a discussion group on Facebook (the Familial Hypercholesterolemia (FH) Discussion Group – https://www.facebook.com/groups/47098836197/) which made me feel a little bit less alone in the world. There, I started seeing comments and questions from people just like me who wanted to know more information or just wanted to share their journeys with others like them, and to be heard. A feeling I knew too well. Fast forward yet some more time, and the Family Heart Foundation was founded and even later than that I became personally engaged with it. They are great for a lot of reasons (just check out their website and learn for yourself: https://www.thefhfoundation.org/), but the one reason I love the most is, again, because they bring people like us together. We can learn from each other and feel that we are not alone. Medicine has advanced and I find that now more doctors know, for the most part, how to deal with our disease, or at the very least they know what specialty care they can refer us to so we can find proper management for FH. It is with this advancement that I now know for sure that I have HoFH, because genetic testing is now more available than before. But if it hadn’t been for these resources and these groups of people and their experiences, I would not have known what would have been possible for me. Medicine advancement is great, for sure, but the strength we can find in the community of people that share the same experiences, fears, as well as successes and victories as us is invaluable! It’s like a much needed virtual hug. Every day, I thank people who have put these types of forums and resources together for their time and their drive to fill a void that was very much painfully felt for people like us. This week is Rare Disease Week (February 28 is Rare Disease Day). Because I have HoFH which is the rare form of FH, I want to use the platform that I have to thank all of you for sharing your experiences with me, over time. I hope my journey is also helpful to some of you. To all of you, I say: you are not alone. We have each other, and I hope you reach out and know this to be true. I hope you will use the platforms that you might have (groups, and social media accounts) to share with others and make other lost people feel less alone. The power of a community of like-minded people is truly priceless. Much health and hope to all of you!
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Blog Post by A.W. About this Blog
In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.