A Heart a Day for FA – Rare Disease Awareness

Ok, you are probably thinking to yourself “what is FA?”  It stands for Friedreich’s Ataxia, a cause very near and dear to my heart.   It is a rare degenerative neuromuscular disease that often affects/weakens the heart! I am a Pilates teacher and a Mother of four- my oldest son was diagnosed with FA in 2010.  Our lives changed forever on that day and our new normal sank into our hearts.  This also changed the direction of my own Pilates journey!

As February is now upon us, you can’t help but to think about the heart.  February is for Valentine’s Day and Heart and Stroke Awareness Month. In addition, February 28, 2019, is International Rare Disease Day. This month, I am committed to spreading the word about Friedreich’s Ataxia and the effects it has on the heart.  Not just the physical heart but also the feelings of the heart and the heart of the family.

Friedreich’s Ataxia is a degenerative neuromuscular disease that affects the entire body.  I am going to focus on how this disease impacts the heart.  The FARA website https://www.curefa.org/ best describes the symptoms of a Friedreich’s Ataxia heart, “symptoms that may occur include chest pain, shortness of breath, and heart palpitations. These symptoms are the result of various forms of heart disease that often accompany Friedreich’s ataxia, such as hypertrophic cardiomyopathy (enlargement of the heart), myocardial fibrosis (formation of fibre-like material in the muscles of the heart), and cardiac failure. Heart rhythm abnormalities such as tachycardia (fast heart rate) and heart block (impaired conduction of cardiac impulses within the heart) are also common. “

None of the symptoms are reversible and will progress with the disease.

The non-physical symptoms are felt differently by everyone.  As a parent, it breaks my heart a little at a time as I watch what is happening to my child.  In my other children, I can see that they struggle to understand what is happening to their brother.  For my son, I see the physical toll this disease is taking on this body and I know the challenge in his everyday life.

However, for all the hard stuff there is also a beautiful lesson in love.  Love in the moment, love the ones around you today and love with your whole heart.  We never know what tomorrow will bring and none of us really know how much time we have on this earth, so we better make the most of the time we have.

I also try to move and teach with my whole heart.  Sometimes I believe we just need to slow down and give gratitude for our heart- each and every beat it makes.  We are alive because of it and cannot live without it.  We also cannot move without it.

As the old saying goes, home is where the heart is, and this is true.  This is where is the campaign began- in my own home.  For the month of February, join me in spreading the awareness of this rare disease.  Follow me on social media (Instagram – arc.pilates – and Facebook – ARCPilates)  and watch my journey as I post a heart every day for awareness.  Join me in sharing your heart photos and use the #aheartadayforfa so I can follow along.  Help me spread the love to all those suffering from this disease and to all their loved ones who are giving their whole hearts to live a life filled with love.

This disease can be so lonely and often many people do not understand what it is like to live with FA.  I believe it is so important to educate from the heart and from my own experience.  Let there be hope, joy and most of all love.

Please leave me a comment below with your favourite heart emoji and let’s spread the love for all those living with FA and those looking down on us.

Making my ARC!