How it Started
It was a regular school morning in February of 2008. My siblings and I were going about our regular routines getting ready for another day. I was feeling really great and was on my way to the shower when I found myself lying on the floor hazily waking up, feeling extremely dizzy. I had just passed out. I remained extremely dizzy the rest of the day so I ended up taking a trip to the ER to make sure it wasn’t serious. After all the tests came back okay I went back home, but the dizziness didn’t let up.
That was how my journey started.
I couldn’t even tell you how many doctors I visited or how many tests I had done before we were finally given some answers. In June of 2008 I was officially diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), a form of Dysautonomia. Of course my family and I had no clue what that was other than what the doctor could tell us. “The most predictable thing about it is that it is unpredictable,” were the words the doctor had used. We went home and immediately started doing research online. The most helpful site we came across was for an organization called DYNA (Dysautonomia Youth Network of America). DYNA was a lifesaver. For instance, DYNA was able to give us specific information to help my family, friends, and high school to better understand what I was going through. My symptoms would vary daily, and made it difficult to maintain my daily routine. My independence was nearly gone for much of my early diagnosis. Attending school was a continuous struggle with my unpredictable health, but with the help of some amazing teachers and staff we were able to develop an Individual Education Plan that allowed me to complete much of my schoolwork at home and online. Now, at 20 years old I have a driver’s license, but only drive if I’m symptom free for 3 months with a doctor’s approval. I graduated high school on time, and even though my condition makes it tough to take any college courses, I am continuing to further my education through some online courses and short seminars. I have good days and bad days, but choose to focus on the good and always maintain a positive outlook. A great thing about DYNA is that they have a Youth Ambassadors program that offers a chance for myself as well as other young people diagnosed with Dysautonomia to support and share with each other.
My sister Joanna and I were just itching for a chance to do more for the organization and raise more awareness. As the two of us were walking one morning, we came up the idea to do a Dysautonomia Awareness Walk. The main thing we wanted to do was just spread the word about what this condition is and inform people. We also wanted to find a way to help out the DYNA organization. They have done so much to help our family and friends, as well as so many others. It is an unbelievably amazing organization, run by wonderful people.
The support and encouragement my family and I received since starting this project has been overwhelming positive and continues to be a huge source of motivation. I cannot thank you all enough for your continued generosity and look forward to the many walks to come!!
That was how my journey started.
I couldn’t even tell you how many doctors I visited or how many tests I had done before we were finally given some answers. In June of 2008 I was officially diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), a form of Dysautonomia. Of course my family and I had no clue what that was other than what the doctor could tell us. “The most predictable thing about it is that it is unpredictable,” were the words the doctor had used. We went home and immediately started doing research online. The most helpful site we came across was for an organization called DYNA (Dysautonomia Youth Network of America). DYNA was a lifesaver. For instance, DYNA was able to give us specific information to help my family, friends, and high school to better understand what I was going through. My symptoms would vary daily, and made it difficult to maintain my daily routine. My independence was nearly gone for much of my early diagnosis. Attending school was a continuous struggle with my unpredictable health, but with the help of some amazing teachers and staff we were able to develop an Individual Education Plan that allowed me to complete much of my schoolwork at home and online. Now, at 20 years old I have a driver’s license, but only drive if I’m symptom free for 3 months with a doctor’s approval. I graduated high school on time, and even though my condition makes it tough to take any college courses, I am continuing to further my education through some online courses and short seminars. I have good days and bad days, but choose to focus on the good and always maintain a positive outlook. A great thing about DYNA is that they have a Youth Ambassadors program that offers a chance for myself as well as other young people diagnosed with Dysautonomia to support and share with each other.
My sister Joanna and I were just itching for a chance to do more for the organization and raise more awareness. As the two of us were walking one morning, we came up the idea to do a Dysautonomia Awareness Walk. The main thing we wanted to do was just spread the word about what this condition is and inform people. We also wanted to find a way to help out the DYNA organization. They have done so much to help our family and friends, as well as so many others. It is an unbelievably amazing organization, run by wonderful people.
The support and encouragement my family and I received since starting this project has been overwhelming positive and continues to be a huge source of motivation. I cannot thank you all enough for your continued generosity and look forward to the many walks to come!!