My name is Becky. I am 12 years old and I live in PA. I am Amish and do not have the Internet but I am a very active member of DYNA. Here is my story:
From what I know I was a healthy normal kid. Of course I got the typical cold and flu every once in a while and the typical childhood illness things. However, in January of 2003, I got a really bad cold (not at all “typical”). I coughed and coughed and couldn't sleep at night. I was very dizzy and had very bad headaches, and to explain it a little easier, I just always felt terrible!
Our family doctor thought I had a virus at first. Next they thought it was inner ear infection. I felt so bad that my family thought maybe something else was going on and they decided to get a second opinion. Next I went through tests and tests and saw doctors and more doctors. I was getting new symptoms about every week and getting worse instead of better.
One of our friends knew a doctor personally and they called him. He recommended that we see another doctor and he got us an appointment right away.
This doctor knew about dysautonomia conditions and he diagnosed me with POTS. They tried different kinds of medicines, but nothing seemed to help and I was still not feeling well at all. I felt very alone.
A family friend who had the Internet found DYNA for me and I became a member. By doing some research my family also heard about Dr. Abdullah in Maryland and decided to see if he could help me. He is a private Cardiologist that treats some kids with POTS and other dysautonomia conditions. Dr. Abdullah was really nice and he put me on some medicines that seem to be helping a lot and I am starting to feel a little better now. Most of all he understood me and he explained things to us and he just seemed to really care about his patients and know how to treat dysautonomia.
I am very, very lucky because I was diagnosed after being sick for only 3 months and I found a good doctor early.
DYNA has helped me a great deal. Kids in DYNA write me by regular mail since I don't have the Internet and I write them back. I don't feel so alone anymore, I have found a lot of new friends, and because of DYNA, I have found, “A Ray of Hope.”
