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CAH: Male Perspective

Calm And Healthy:

Living with CAH

My Experience

My wife, Audrey, gave birth to our first child, Andrew Gehrig Eisenberg, in February 2005. At 7.5 pounds and 20 inches, he was a healthy, bouncing baby boy. Our only worry was put to rest when his newborn screening test showed negative for CAH. He would be a carrier but would not face a lifetime of medicine and salt-cravings.

Andrew’s birth prompted me to consider my own life with CAH – what did it mean? How had my life been different because of it? Looking back, I can say, with few exceptions, that I have lived a normal life. Sure there were the incidents of severe acne, the shorter stature (5’ 7 1/2” thank you very much), and my strange food cravings (you haven’t lived until you’ve tried a bowl of croutons, pickles and French dressing), but I have generally lived my life without much CAH-related trauma.
 

Having CAH, for me,

was another part of my life,

like being near-sighted.

While awaiting the birth of our son, I spoke to my own parents about my early childhood experiences with CAH. I remember a blur of episodes of sickness, urine samples, and bone density tests. Fortunately, my parents never made it scary. Even now, when they tell me how sick I was as a newborn and young child, they gloss over the trauma and calmly recount some of my worst episodes concluding, “but it all turned out OK….” Having CAH, for me, was another part of my life, like being near-sighted.

My parents loving, “we’ll just deal with it,” approach set the tone for my life experience with CAH. Because I had such a casual relationship with the disease, I was never the best patient. During college and graduate school, I would go days without taking my medicine. If I felt really weak I’d load up on Prednisone or throw some salt into my Coke. I knew why I was feeling poorly, but I also knew that I would be fine.
 

The worst scare I have had with my CAH came in the summer of 2002, when my endocrinologist, Dr. Jeng Su, found testicular growths. Like my parents, Dr. Su did not overreact, but presented me with several options for their cause, the most likely of which was my medication. A few worst case scenario options included the possibility of cancer, or that the growths would render me sterile. We were relieved when tests verified Dr. Su’s theory related to improper dosages of my medicine.

So here we are, a few days before Christmas and my wife and I are ready to celebrate Andrew’s first holiday. I continue to live my life as I always have, taking my medicine, (extra when I feel ill), eating salty foods, and keeping active—running marathons, climbing the Hancock Tower stairs, and chasing after a 10- month-old. I know I will always live with CAH, but it is manageable. Life with CAH may have its rough spots and even some scares, but it is manageable with good patient-doctor communication…and the occasional salted Coke.

I was born on December 23, 1984, at Brigham and Women’s in Boston and was back in the hospital a month later. My aunt said I resembled a “flick chicken.” Regardless, it was clear to my parents and my pediatrician that something was wrong. Without much help from the doctors (an unfortunate trend during my adolescent treatment), my mom began to give me Pedialyte. My mom is still unsure as to what propelled her to give me the electrolyte solution, but it was obvious that my classical salt wasting CAH wasted no time manifesting itself.

"For me, CAH

is a part of my

very nature and

character."

Now, Bostonians are fortunate enough to have access to some of the best teaching hospitals in the country, if not the world. My first few years of treatment were at Children’s Hospital. My memories of my appointments include roundtable discussions with teams of doctors. At one point, a doctor even went so far as to accuse my parents of not giving me my medications because my bone age was running out of control. With not much idea of where to turn to next, we visited the late, great Dr. John Crawford at Mass General. Aside from being a great doctor, Dr. Crawford was a great human being. It is because of him that I stand 5’8 ½’’ instead of 5’3’’. And most importantly, it is because of Dr. Crawford that I was physically able to play football and baseball, to have the same opportunities as every other teenage boy.

My first real experience with the potential deadliness of CAH was in the summer of 2002. While working in a camp, I contracted a bug bite that eventually brought upon adrenal crisis. I entered the hospital with a blood pressure of 70/30, and for the first 24 hours I was under nonstop care. About two weeks later, I was discharged with a month’s worth of IV antibiotics. Combined with the accompanying fear of an experience such as this, it was an eye-opening experience to say the least.

This new experience led to some investigating into this new side of CAH my family and I had never seen before. Eventually, this investigating led us to CARES. Our first trip to a CARES event for the New England region left my family in shock of how much we had been missing out on. From certain precautionary measures I can take to just meeting people face to face with CAH, it was a great learning experience. It lifted this shroud of obscurity I had concerning CAH and made me much more aware of how my condition can affect me.

Thus, how has CAH impacted me? Aside from the occasional annoyance of having to change doses, CAH has shaped who I am as a person more than any book, teacher, or movie. My day begins and ends with CAH; as I take my pills twice a day, I am constantly reminded of what I had to go through just to get to this day. For me, CAH is a part of my very nature and character. 

The author, a CARES member, is a Stay- At-Home Dad and tour guide and resides with his family in Chicago.

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