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How a Rare Disease Changed My Life


May 20th is Behcet’s Disease Awareness Day.

This disease has been part of my life since I was a child. I can still place myself in that little seven-year old girl’s body, kneeling on my legs at the landing of our staircase. I was sitting close with my nine-year old brother and watching my parents try to find the words to explain the drastic change to our family. My mom finally had a diagnosis after going through many medical procedures and doctor appointments.

These words have forever changed our family.

“Mom, has Behcet’s Disease.”

As a kid, I couldn’t quite grasp what that meant. She looked fine to me, but I could tell that there was a sadness in both her and my dad’s eyes. They knew what the disease was already doing to her body and what it had the potential to do.

“There is no cure.”

This was even more difficult to hear. I remember what my next thought was, but I can’t remember if had the courage to ask it, or if they told us the answer before we thought it.

“She won’t die.”

At this point I remember crying. The relief that she won’t leave us, but that she was still sick with an incurable, invisible disease was still hard to take in.

Over the years, I still just saw my mom. I didn’t see the disease first, I saw her first. She is the most amazing, optimistic, role model that a kid could ask for. Super involved, towed us to all our activities, and spent a lot of time making things very special for us. She has the biggest heart and has always put everyone before herself.

I did see what the disease did to her though. Her flare-ups could take her down and she would feel miserable for days at a time. My brother and I quickly learned what to do to help ease her of pain; an ice pack, dark room, prednisone, midrin, cold water and a check-in from her two adoring kids. We knew that she was sick, but she never complained or told us how bad it really was.

She was always optimistic and still is today.

Having a parent with a chronic and rare autoimmune disease did change our lives. There was some really difficult things that we went through, but we have persevered and have become a very strong, resilient team.

I do think that my passion in the field of child life was stemmed from my experience. I have a deeper understanding and emotional connection with families going through similar situations.

Looking back, I wish that there was a child life specialist working with me to help me understand what was happening, to provide support to my whole family and offer interventions that could release feelings and give us the sense of empowerment and normalcy.

I suppose I will take on that role and teach kids what I have learned from both my experience and from the training and education in child life.

To learn more about Behcet’s Disease check out this video from Dr. Yazici at the Vasculitis Foundation. My mom met with him a few years ago and his treatment plan made a HUGE difference in her life!

Here is my mom with one of her four grandkids, spoiling them with ice-cream and Gramy goodies!


My Connection To Rare Disease Day 

International Behcet’s Disease Awareness Day

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