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| Dr. Mitchell Geffner, Paul Newman, Me and Hello Kitty |
Below is the letter I sent one year ago to Dr.
Mitchell Geffner at Children's Hospital Los Angeles that started my journey to
advocating, awareness building and ambassadorship. He is co-director with Dr.
Mimi Kim of the Congenital Adrenal Hyperplasia Clinic. This was a giant leap of
faith and I haven't regretted it at all. In fact, it is what keeps me going.
After you read below, follow this link to read about Dr. Geffner's reaction to my letter.
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To help the Congenital Adrenal Hyperplasia
Clinic at Children's Hospital Los Angeles, please 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 the reason I
am doing all of this. Thank you in advance!
6/28/16
Subject: Once in a lifetime email from original
CAH patient
Dr. Geffner,
This is an email that comes only once in a
lifetime. It has taken some thinking about what I want to say.
My name is Brian Edward Hacker. I was born June
XX, 19XX and first entered Children's Hospital Los Angeles in the Emergency
Department on what I believe was July 2, 1968. My mother was referred to the
hospital by my pediatrician who did not know what was wrong with me.
When I entered CHLA, a young, very young
doctor, in fact it was her first day on the job, named Dr. Ann Kershnar (Sp?)
took my case. As I have been told by my father it took the doctors a while to
figure out what was wrong with me.
Well, let's just say that (I helped create) the
newly opened CAH Clinic began with me. I was diagnosed with Congenital Adrenal
Hyperplasia, Salt-Wasting type. (One of) The first patient(s) with that
diagnoses at Children's Hospital Los Angeles and one of the first on the West
Coast.
I was a patient of Dr. Kershnar's for a while
before she moved. I then became a patient of Dr. Thomas Roe. Of course, there
were many doctor's familiar with my case. I spent days there for testing and
trials, I believe. There were the scheduled visits and unfortunately, the
visits to the emergency room when I got sick and my body shut down due to not
keeping down the cortef/hydrocortisone/(decadron) or whatever was prescribed at
the time.
There's a lot more to my story growing up and I
can get into that another time. What I want to tell you is who I am now.
I am a healthy 48-year old man. I have two
beautiful daughter's who did not get CAH. Just last year, I ran the Marine
Corps Marathon! Yes, this CAH man ran a marathon...26.2 miles! I never would
have even given that a thought growing up because I had always been told to be
careful of the stress I put on my body. Through training I learned to balance
my meds, my electrolytes and my salt intake. The only problem I encountered was
shortly after I finished because my doctor and I had not planned to keep the
hydrosortisone intake going.
What is next? Well, I plan to be an inspiration
for all of those with CAH and their families and compete in a Half Ironman in
June 2017 (this has been changed to Sept. 2017 IRONMAN 70.3 Augusta). I want to show them that there
are things that are possible, that have been thought of as impossible, if
proper planning and preparation are followed.
Why am I reaching out now? 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. (I have found out this isn't entirely true) But then, I realized I
am the face of CAH. I struggled and still struggle.
There is not much information about people my
age from what I can tell. My numbers are way high, but I present as an
extremely healthy, marathon running man. Maybe through my encouragement I can
help change that.
I got emotional the other night when she (my
wife, Merrill) asked why I am suddenly reaching out to the CARES Foundation and
CHLA. I rarely, get teary-emotional, but I did this time. I said, "Because
it is who I am!"
Hopefully, you find my email of interest and I
hear back from you. I am always happy to share more about my life.
Have a great day and keep up the fantastic work
that is being done at CHLA.
Brian Hacker
Charlotte, North Carolina
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