On the eve of the Lp(a) Awareness Day, we have this personal blog prepared for you by Marc Rijken, one of our Ambassadors and Members of the Lp(a) International Task Force. Marc shares his powerful story and a call to action to get to know more about an invisible risk factor which affects one in five people. But hold on, there is more. You can meet Marc’s family and learn more about their daily life if you open a link to the very immersive article with additional pictures and videos.
Dear all,
Today marks a strange day, as it is exactly 10 years ago that I suffered a (first) heart attack. I know that not all of you are aware, apologies if I gave you a scare. I am currently doing very well and aim to be the fittest heart patient of the Netherlands 😊.
For me, it took 6 very long years and two heart attacks, until the diagnosis and root cause of my heart/artery issues (elevated levels of Lp(a)) was made. By coincidence, my “anniversary” is only 1 day away from the Lp(a) Awareness Day, March 24.
As I am sure most of you are unaware of Lp(a), I thought this was a good time to tell you a little bit about this.
Lp(a) is a lipoprotein and is part of everybody (just like for example cholesterol is). If you however have elevated levels of this protein, you have an increased risk of cardiovascular diseases (heart attacks, atherosclerosis, and related). It is inherited and runs in families, so if your relative, especially parents had or have heart issues, you should be alerted.
Why do we need an Lp(a) Awareness Day, you might think, … here are some reasons:
By sharing this post and attempting to raise knowledge and awareness of Lp(a), I hope to be able to protect others from a similar (patient) experience; time is of the essence! Besides time, knowledge can make the difference, as certain life(style) choices can be made to reduce the risks.
As elevated levels of Lp(a) is genetic, my family was also tested and two of my daughters unfortunately inherited this disorder. This was difficult to accept at first, but currently I am confident that they will be able to live a healthy life (now that they are aware).
Throughout the last 10 years I have learned a great deal about myself, and I look back with pride on the way I (and my family) have coped with this. I have also learned through my role as a Patient Ambassador with FH Europe Foundation, what a difference it can make for others to share our experiences and to interact with other fellow patients.
I could not have imagined the network, projects, webinars, the Global International Lp(a) Taskforce, scientific congresses, partnerships and friendships (hey it even got me into the European Parliament in Strasbourg), which elevated Lp(a) has also indirectly given me (through my ambassadorship).
Which brings me to my first sentence of this post, a strange day, as the journey came with a lot of emotions (such as fear, worry, frustration, anger, and sadness).
You can read all about the impact which elevated Lp(a) has had on me and my family over the past 10 years which has been very well put into words in the following article: https://live.novartis.com/article/family-ties/family-ties-subsection. (Thanks Goran)
Thanks for taking the time for this post - turned into a blog - and please feel encouraged to spread the word (awareness)!
Marc Rijken
Let us know if this story how this story affected you. Are you suspecting elevated Lp(a) in your family? If you need additional information, please contact Emma@fheurope.org.