Having a more-or-less terminal disease (isn’t life one, too?) makes you appreciate every new day that lies in front of you. From the first breath you take when your eyes peel open and you look at the window to see the sun peeking in in the morning, you tell yourself: “Wow! What luck?! What blessing?!” It really is humbling …
I have been told since I was 8 that I will not make it past 18, or at the most past my 25th birthday. As I am entering the 45th year of my life, bruised and scarred and all, I am grateful for the years I have been given, and for the life I have lived. If I were to be born again today, knowing what I know now, I would not have had it any other way … Like so many afflictions that sound and look like dead-ends, HoFH is a character building experience right alongside being hopeless and hard most days … I like the hand I was dealt, although many doctors deemed it “a bad one.” It’s my hand. It’s the only one I know, so I will take it.
Apart from being selfishly grateful for another year, I am most grateful for the opportunities that I have had to share my journey and for all of you who have found comfort or help in my words.
Looking back at the past year, here are some of the avenues where I have shared what I am living with every day:
- I have continued updating this blog. You can find it by bookmarking it, subscribing to it by email or by following the News & Blog section on the Family Heart Foundation’s site: https://familyheart.org/news-blog
- I have updated my Facebook page (https://www.facebook.com/LivingWithFH/) with pictures and events I participate in throughout the year, links to publications and articles that bring awareness and offer information about FH. I am truly grateful to you all who have become followers of this page this year.
- I have also gained more Twitter followers if you follow me at @livingwithFH. I post most of the articles I find, as well as events I participate in and links to posts on this blog at https://twitter.com/livingwithfh. I also share what I find about FH or heart disease here, as well as many initiatives that the Family Heart Foundation participates in or advocates for.
- In February, I wrote an article for the Circulation Journal of the American Heart Association about how I selected my valve when it was time for open-heart surgery: https://www.ahajournals.org/doi/10.1161/CIRCOUTCOMES.119.005523
- In March, I was interviewed for The Health Monitor about what it’s like to live with Homozygous FH: https://familyheart.org/media/HealthMonitor_W1819.pdf?fbclid=IwAR2rzuB7OM-xOnxSmYJ8-KqgZ9dVlVRtfckd26Tku8HfWtwz6eqig-jIlxY
- In October, I participated in the FH Summit, and I spoke with representatives of pharmaceutical companies, geneticists, and doctors from the US and from around the world about our journey as patients with FH to hopefully create awareness about how not one treatment fits all and how what works for one country might not be true for another, and so forth.
This blog is reprinted with permission from A. Wilson. To view original post visit:
https://livingwithfh.blogspot.com/2019/12/another-year-of-advocacy.html
Blog Post by A.W.
About this Blog
This blog by A. Wilson follows her everyday journey of living with familial hypercholesterolemia (or FH). She shares her own persona experience with this inherited disorder, and how she manages it daily – from what literature she reads on the topic and what her doctors say to how she lives her life. This blog does not offer advice, in any way, to anyone suffering from this disease.
