I am a 43 year old, wife and mother who is currently living with ATTR. My gene mutation is ALA60, the one that goes after the heart is the least favorable is what I am told. I have heard so many horror stories of people and getting a diagnosis but I never had that issues. My dad passed away from ATTR in 2010, and set the stage for me, good and bad. I never got tested for the gene after he passed away because I didn’t want to live with a ticking time bomb. My dad went from walking and being active to being bedbound and not even able to feed himself. Fast forward to 2019 and I started to have issues with fluid, and no one could figure it out. Then towards the end of 2019 I was having issues with my heart. My sister encouraged me to get the genetic test, and I did. It sat in my kitchen for 2 weeks, I think somewhere deep down I knew what it would say. March 2020 Covid hits and my results come in to my family doctor, she has no clue what Amyloidosis was and told me it was positive over a zoom call. I started crying and then she realized that it wasn’t the best thing. I am currently on Tafamidis and see a dr at MUSC.
Life has changed so much in the past 2 years, and so many limitations that I see and experience.
Life has changed so much in the past 2 years, and so many limitations that I see and experience. I have to constantly remind myself that my dad’s journey is not mine, that there was no treatment when he was alive, but it’s so hard to get that image out of my head. When I first got diagnosed it was as if the whole world went black, I couldn’t see anything but death knocking on my door. Today things are much better, my faith has grown tremendously and I know that God holds me up each day. My husband has stepped up and is living his vows openly each day, as he holds my arm as we walk anywhere so I dont fall. My boys who are 10 and 11 get to see that love being played out in their eyes. Amyloidosis is hard, Amyloidosis is dark, but my goal is to always look for flowers along the way and educate anyone I can. I have started a blog refinedthroughthefire.com and it helps so much. When talking to friends and family I always feel like I have to protect them, when I write on my blog its the real me, the real struggle, the real walk. Amyloidosis has taught me many things, to enjoy each moment, to live life to the fullest and to love as hard as you can. I am so thankful for my dad, and all that he did to push for a diagnosis that saved me, helped me get treated early. My hero!
Refined – Faye – UNITED STATES