CAH, IT IS WHO I AM!

As I have mentioned previously, last October I ran the Marine Corps Marathon. It was 26.2 miles of cruelty to my body. I finished and am still amazed at what I could do with my body.


In July 1968, no one thought I would be alive to be able to accomplish with my body what I did last year. Fifteen days after being born in June, I was fighting a losing battle with my body. I had been taken to the emergency room at Children's Hospital Los Angeles (CHLA) #ChildrensLA after my mother knew something was not right with me and had taken me to the pediatrician. As I lay in the emergency room so gravely ill that I was baptized and given the last rites, a very new doctor, Dr. Ann Kershnar, was assigned my case. To the best of my knowledge this was her first day on duty and I was one of her first patients. After much lack of knowledge and medical investigation by the staff at CHLA I was diagnosed with Salt Wasting Congenital Adrenal Hyperplasia (CAH). My adrenal glands do not produce cortisol which is a hormone that regulates many parts of the body. That's way oversimplified, but you can Google it to get more information. :)

As the years went by, I spent many days at Children’s Hospital. There were the weekly, monthly six-month and unfortunately, the emergency room visits. After Dr. Kershnar there was Dr. Thomas Roe. These two doctors knew me inside and out, literally. I had enough blood drawn and urine collected that it is a wonder I didn’t become dehydrated from that. When someone with CAH becomes dehydrated it can be dangerous. You can’t keep the medicine down. The body goes into shock. Whenever that happened for me there was the inevitable trip to the emergency room to get that IV full of fluids and a cortisol boost. I became so knowledgeable about what to do that one time when I was at Marquette University and needed emergency services, I was the one telling them what to do, only to have them say they needed to go check and then came back to say, “Yes, you were correct. Here is what we are going to do…” Duh!

Growing up I was always told, “Be Careful!” I had to have the salt tablets, food with salts, whatever was necessary to keep my salt and electrolyte levels stable. I did a 5K (3.1 miles) run when I was in junior high school. My parents followed me in the car to give me salt tablets. The funny thing is they lost track of me and panicked. I finished the race ok. I also played soccer and baseball, and in high school I was in marching band.

Growing older with CAH was taken for granted. I saw an endocrinologist for a while. Then a general doctor tried monitoring my numbers. Somehow this worked. Finally, two years ago, I went to my newest endocrinologist, Dr. Adam Spitz with Novant Health Endocrinology. He helped me through marathon training and the Marine Corp Marathon. There was a mistake made in the planning, but we know for the future what to do when I finish an endurance race.


Fast forward to the past month or so. There have been emails going back and forth between myself and the co-director, Dr. Mitchell Geffner, of the new CAH Clinic at CHLA and the executive director, Dina Matos, of the CARES Foundation. (These two important groups will always be linked on the side of the blog.) CARES Foundation leads in the effort to improve the lives of the Congenital Adrenal Hyperplasia community and seeks to advance quality health care through support, advocacy, education and research.

Why the sudden interest and involvement? As I explained to Merrill when she asked the same question,  "I have fully come to realize who I am and that CAH is not a hindrance. I have wanted to reach out before, but it seemed silly. I felt no one would care. Time has moved on. CHLA has grown by leaps and bounds. Diagnoses and treatment are so far beyond what I experienced. But then, I realized I am the face of CAH. I struggled and still struggle." And then finally, "Because it is who I am!"

I am becoming very involved with the CAH Clinic at CHLA and CARES Foundation. That is all I can say now, but here are very exciting things happening now and in the planning stages.

I will be doing my training and racing for all the children diagnosed with CAH and their families to show them that there are unbelievable things that can be done. It just takes the proper medical oversight and training.

I hope that through my encouragement, advocacy and promotion I can advance the knowledge of CAH!

One last thing, I will not be doing this journey to an IRONMAN alone. I will have a training partner. More about that in my next blog. But here is a hint...



Update -
Please take time to follow this link (http://support.chla.org/pages/tri_ingby50) to learn about my journey with CAH and how you may help support the work of the CAH Clinic. This is a major reason I am doing all of this. Thank you in advance!


I slip this last part in because it is something I do not like to do, but it will help me out in the pursuit of my goal by age 49 and then eventually age 50. If any of you know a business, individual or something I may not be aware of that would sponsor or support someone doing what I am, feel free to contact me. Any help would be appreciated. I would make any supporter proud to be involved with me and Children’s Hospital Los Angeles.