Vencore Employee or Rare Disease Patient?

It turns out, you can be both...

Those of you who have been reading our blog know that Vencore Health focuses on, among other things, rare diseases. This week we are taking a break from the technical and business aspects of our industry to remember why we all work in life sciences: THE PATIENT.

When I stopped practicing medicine to become Vencore’s Chief Medical Officer I was worried I would miss seeing patients. I was right. I still think of Phyllis, who was 97 when I left. She never wanted to talk about her blood pressure of 200; far more important was her latest choice of toenail polish. Jennifer, who was saddled with so much at the age of 24 – still makes me grateful for my children’s good health. So yes, I miss seeing patients. I also find great reward in applying my medical skills on a larger scale. It is wonderful to have access to the lives of 148 million patients.

This week I am introducing a Vencore employee who has quite a story to tell. Many thanks Jessie, for your candor, and tireless effort.

Tara Grabowsky, MD
Chief Medical Officer

In October 2011, I was called to the ICU because my mom was very ill from complications from a rare disease called Hereditary Hemorrhagic Telangiectasia (HHT).  When I entered the hospital room I saw my mother on life support and several doctors looking at me with concerned looks on their faces.  My heart sank.  They asked me about HHT and told me they did not know much about the disease or a treatment.  They asked me if I could give them some insight about the disease or anything that could help.  I looked at my mom laying there and knew that I needed to tell these doctors the right words in order to save her.  How do you do that?  How do you teach someone in five minutes about a rare disease and then give them a solution to save her?  The answer is you can’t and the reality is I had already lost this battle before I even entered the room. My mom was gone that same day.

HHT is an inherited disease that affects over 1.4 million people worldwide. It is caused by defective blood vessels in the brain, lungs, liver, nose, skin, and intestines, and typically begins with nosebleeds during childhood. HHT is treatable but can result in serious health problems if not promptly diagnosed and treated. 

I inherited HHT from my mother and battle nosebleeds daily. I currently have 4 AVM's (abnormal blood vessels that can bleed at any moment) in my lungs and have to monitor them on a yearly basis. I have made a promise to my husband Rickey and daughter Katie that I will live a long life and beat HHT.  I also want mom to look down and smile knowing that I am helping others. 

I know I can never bring mom back, but I can raise awareness to prevent this from happening to someone else.  I can also raise awareness with doctors so they can learn more about the disease and don’t need to ask these tough questions to people.  To do this, I have been working with patient advocacy groups, and I have been to Capitol Hill to talk to policy makers.

I love you mom, I miss you every day. Don’t worry, we are going to beat this thing!

Jessie McQuillen

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