Meet and Greet

In Good Company with Claire Held

My Story

Like many of you – my story starts off rocky. I was born 2 & ½ months premature, my mother had HELLP syndrome, and I lived in the PICU for the first part of my infancy. Over the next year and a half my body shut down twice – major organ failure, 2 different comas and many, many months in Seattle Children’s Intensive Care Unit. I was Air Lift’s Northwest poster child and Children’s Hospital Merical Network Child in the early ‘90’s. I could go on and talk about all the other trauma my body went through, but at this point I will stop. Because the true story is not just about me. It is about the incredible doctors such as Ron Scott who in 1991 suggested the possibility of “metabolic disorders”, my parents who never gave up looking for answers and never taking ‘no’ for an answer.

There were many years for my parents and doctors where LCHADD was much more present in our lives. I was in and out of the hospital almost constantly for the first 1/3 of my life. This is not because my parents were doing anything wrong, nor any doctor – they just did not know how to manage and treat LCCHADD.

\Newborn screening for LCHADD did not exist, the medications so commonly used now came from all over the world (Canada, France, England & Italy), the protocols for emergency visits were still being learned and the treatment delivered was in a 'trial and error' stage based on research and best-guesses. We all benefited from the brilliant minds of those that came before us, and I never take what happened to me in my infancy too personally, because yes, while all those medical codes were being called, all the experimental drug searchers were being made and all the communication by incredibly smart people were being had – I knew no difference. It was my parents, my extended family and my family friends that had to live with the stress of LCHADD in the beginning – not me.

So let me leave you with this – my whole attitude towards living with and managing a lifelong, inborn genetic error -  “I have LCHADD, but I’m not LCHADD”. This is a message I want each and every single one of you to believe in your core. I do not care if you are the patient or the parent, sibling or the friend you need to hold this value as a constant.

Too many times in my career working with individuals from all different backgrounds and those living with all different types of disease states I have seen the ‘mindset of the disease’ take over the ‘mindset of the whole person’.

YOU ARE MORE THAN LCHADD – your son, daughter, brother, sister, friend, grandchild, niece, nephew…. are more than the disease they were born with.

While LCHADD needs to be taken seriously, diets should be followed, and regular inquiry and critical thinking must be applied through conversations with specialist. I will do my best at ‘In Good Company’ to help you navigate and balance that fine line of medical necessity and independence.

I started my consulting business, In Good Company, to help you! 

 Please set up a consultation appointment with me to learn more about how I can help you!

Note: photo is of me and my mom, when I was 4yrs old.