Feeling Blessed

This article made me feel doubly blessed today: http://www.nasdaq.com/article/aegerion-pharmaceuticals-observes-first-annual-fh-awareness-day-20120920-00558

 

It made me feel lucky, for once that we now have a “National FH Awareness Day”. I remember coming to the US, and hearing that almost every “incurable” disease has a support group, an organization, a research community, an awareness day, week, or even a month (like February for heart disease). But I was not able to find any books, online literature, doctor brochures, anything on FH! I was bummed.

Until a year ago, I still didn’t know there was a support group, till I found one on Facebook (linked to this blog).

I am glad there are more ways than one now to connect with people like us out there, and to know that 1.0 this is a real disease, and that 2.0, hearing their stories, there is life for us. And so much of it!

Another reason I am really grateful after reading this article was because of my reaction to this sentence in the article: “Despite current treatments, many patients with HoFH do not survive beyond their mid-30's.”

I have HeFH, but that is a statement that I have heard over and over and over again from every doctor I have ever seen since I was 6! With an (untreated) total cholesterol of 500-700, my life expectancy was not to be higher than maybe 25-30! I am 37 and 5 months old, and if you look at my recent numbers you might have a heart attack yourself!

Sure, I will never be “cured”, right?! I am still very much just “managing” this – my blood pressure is still high, so is my heart rate, the blockages inside my carotids and heart are still there and some of them worse. But I live a full life! I have been able to live on my own before, with no “life alert” bracelet attached to me, for years. I work a full time job, and a stressful one at that. I travel, I have hobbies, I love my family, and I have not spent one day in a hospital yet, for anything other than tests. In one word – I live. I don’t feel at any time that I am surviving this. I am fully, and wholeheartedly, living this. To what I think is the fullest of this.

I hope that people that are just now finding out that they have this disease are energized about these opportunities out there – not only to get medicine, but also to connect. I hope that they are hopeful, as well. I trust that everyone will know that this is just another thing we were given, when the cards were dealt – kind of like we were made short, instead of tall. It’s part of us, not in spite of us.

We can adjust, and learn to live with this. And thanks to medicine and geeks who develop more treatments, there are many doors to be open for us. And now, we have an official national day to party and celebrate.

Enjoy, y’all! Life is good!