Growing Up with Dysautonomia

Lori Kaplan

My name is Lori Kaplan. I am 22 years old, and a sophomore at the University of Cincinnati. My hair is blonde, sometimes sun-bleached, and sometimes beauty salon bleached! I am studying Early Childhood Education, live in a dormitory, and hate the food service! This all sounds very normal, and easy, but if you have Familial Dysautonomia, a genetic disease that affects the normal function of the autonomic nervous system, none of this is easy. In fact, to have gotten to this stage in my life was not easy at all. I was asked to write a paper by the FD Foundation describing, “How it feels to grow up with Dysautonomia.” I know it was very difficult to live with a chronic illness, but I always had so much help from my parents that it was not until I was living on my own, finally really taking care of myself, that I realized how difficult it was. My parents always made all the final decisions on what I should do and not do to keep myself healthy and functioning. When I moved into the dorm and had to make the decisions for myself, sometimes I made the right decisions and sometimes I made the wrong decisions. If I made the wrong decisions I would have to pay for them by calling up my parents and going home where I could have extra health care from my family. Becoming really sick with a vomiting crisis from not hydrating myself well, or not getting enough rest, or not taking my pills at the right time, I have learned is not worth it. Staying in and not going out with friends because I was too weak and dizzy from low blood pressure, where I am so off balance I cannot walk down the hall, is not worth it either. I have learned that I have to be more in tune with my body in order to stay well. I have to concentrate on my health more than anything else. My health comes first, so that I can have a normal life.

Not being diagnosed until I was 5 years old, my parents raised me as a normal kid who had a lot of episodes of pneumonia. After continuous hospitalizations I was finally diagnosed, and sent up to New York to meet Dr. Axelrod, the one doctor in the whole world who knows the most about FD. From that day on my parents have carefully monitored my health so that I could stay as healthy as possible. Even with such great care I have had very serious hospitalizations, some lasting as long as six months. I spent more time in the hospital in fifth grade then I did in the classroom. That was a very difficult time in my life. Another difficult time in my life was in the summer of sixth grade after spinal surgery for scoliosis. Everything was set up and carefully planned so that nothing would go wrong, and of course everything went wrong. This time I almost died, they tell me. For some strange reason I started bleeding at home and my parents had to rush me to the hospital. What a mess! But I’m still here thanks to the great care from all my doctors and Cincinnati Children’s Hospital.

After all that I had just the normal FD problems of fluctuating blood pressure, pneumonia, broken bones that could not mend, etc., etc. I have always studied very hard, had good grades and wanted to go to college. In my senior year I applied to a very good liberal arts school near Cincinnati. They had an excellent Learning Disability program, and it was a perfect match. I was so excited! I was going to live in the dorm, be on my own, and have a great life! The first week of orientation I came down with a terrible pneumonia. I couldn’t seem to get well. I was on all kinds of antibiotics, and nothing seemed to work. I was too ill for my parents to send me to school, too ill to be at home. I had to be admitted to the hospital. I was there for over a month. I was very sick and in intensive care for the entire time. I still wanted to go to college. I really tried to make it, but it was so far into the semester by then and it was such a long, hard drive there every day. I was not well enough to stay in the dorm. It was impossible. I lost my first year of school, but I didn’t lose my life.

My parents and I battle to keep my lungs healthy all year. It was weekly visits to the hospital and to many specialists. I finally went to New York so that Dr. Axelrod could help me. And she did. Finally I got my health back, chose a better college for myself, and started life over again. The first year my Mom drove me every day to college and brought me home every night. I did very well academically and earned the right to live in the dorm this year. It’s hard, but it is worth it.

My career goals have been influenced by my lifetime experiences with my illness of Familial Dysautonomia. I am studying to be a pre-school teacher with a sub-specialty in disabilities in the young child. I want to work with young children who have health problems and physical disabilities. Because of my illness, I see these children differently than other young adults. I have an empathy that comes with my experience in dealing with assorted health problems all my life. When I am working with these children, I usually like to get to know them as a person first, before I get to know their disability. I treat them the same way I want to be treated myself, and that is not to be judged by my health problems. I want to give them strength and hope for their futures as I have tremendous strength and hope for my own future life. I want to teach them the gift of laughter, to be able to make light about so many of the hard knocks they will have to endure. I have always felt that if you can face up to the problem it isn’t always so bad. I look forward to every day as a challenge and always look for something good and funny in the day. My life would have been a lot easier if I wouldn’t have had FD, but these are the cards that were dealt to me, and I have learned to make the best of them with the help of my wonderful family, friends, and fabulous doctors.