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A Mom's Triumph Over Bechet's Disease

Hi! My name is Fernanda Aler, I am 38 years old, and I have Bechets Auto-Immune Disease.   

Bechets Disease is a very rare auto-immune disease that affects less than 1 in 1,000 worldwide and even more rare in the United States.  The exact causes of this disease are still unknown (thought to be genetic) and the symptoms can be unpleasant at best and debilitating at worst (blindness, joint pain, etc...).

My journey with disease started very early in my life as a child in Brasil 

I vividly remember being in the hospital with canker sores in my mouth and ulcers up and down my throat and stomach.  I also had swollen joints, soreness and flash fevers that would come and go. 

My doctors were puzzled and blamed my symptoms on my diet or that I was being too active and putting too much stress on my body.  After 17 years of undiagnosed frustration, fear and pain, one of my doctors finally took a biopsy of one of my canker sores.   

The Results came in, I had been diagnosed with Bechets Disease  

Unfortunately, because Bechets Disease is such a rare disease many doctors don’t know how it works or how to advise their patients. 

My first doctor literally told me to drop out of school because I would probably go blind and be bedridden so I should enjoy my life now.  Luckily, I got a second opinion where I was educated more about the disease and realized some of the risks and realities that come with Bechets. 

My life as I knew it changed following my diagnosis 

Fast forward a few years. I move to the United States and lived in Chicago during my 20s. I am managing Bechets through diet and medication (Celebrex), but there continues to be some pretty nasty symptoms. 

I would have a canker sore outbreaks once a month that made it almost impossible to eat any sort of food.  This was bad, but the worst symptom was when my joints would flare and I was unable to move for 24 hours and confined to my bed.

I decided to take a big risk and drastically increase my fitness

The turning point of my journey was when I decided to go on a 100 mile century ride.  I loved biking as a child with my family, and despite my doctor warning me it wasn’t a good idea with my condition to be on a bike for such a prolonged period of time, I went for it. 

I laughed, I cried, and I crossed the finish line!  

And I finished the entire ride without a single flare up!!!  Hmmmm...

So now I am in my early 30s and have went on dozens of rides, and I decided I wanted to try something new. 

I wanted to try and run a ½ marathon!

Again, my doctor cautioned it wasn’t a great idea given my condition, but I went for it anyway. 

Again, I laughed, I cried, and I crossed the finish line! 

And what I realized after all this was the more active I became the less medications I took, and the less often I had my flare up attacks. 

But we did have another problem...I fell in love with running too!

This led me to wanting to compete in triathlons.  By this time, my doctor knew to give up on trying to slow me down.  And in 2015, I crossed the finish line for my first triathlon.  And I wasn't done yet!

Later that same year, I finished my first Half Ironman Race.  Wow!!! What an experience and rush. 

I was completely hooked, and continued to compete and finish other triathlons and Half Ironman Races.  But the big day was July 22, 2018. 

This is when I finished my very first full IronMan in Lake Placid!!!

And guess what? I am still going. 

I showed myself I wouldn’t be defined by Bechets Disease, and it wouldn’t slow me down. 

I have made it my personal mission to share my story and motivate other people with this disease, or other issues similar to mine to never give up.  And when in doubt, or in pain, just keep going!!!

You can follow me and my journey with Bechets on Instagram at @tris4behcets. 

 

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