As clinical site coordinator for the UDN, I have a front row seat to the diagnostic odyssey. I am able to work directly and closely with the patients and families and come to know them intimately.
By the time our families arrive at Washington University for an evaluation, they have been through so much. They are exhausted emotionally and physically, yet hopeful, optimistic and grateful. I am always amazed by the character of our families. Patients thank us for any help we can offer, and yet sometimes I feel the services we provide do not seem adequate. I wish we could do more, offer more, and fix more.
The world of genetics is a tricky place. Finding an answer can be difficult. Not finding an answer can be difficult. Finding the answer you were hoping it would not be can be heart wrenching.
This position has been a tremendous learning experience for me. I am humbled every day by what I witness. I will admit that I have become attached to our families. It’s hard not to develop relationships with them. I see their emotional turmoil and witness firsthand the physical and mental demands of having an undiagnosed condition.
As a provider, we have to be sure we have the stamina to take care of these families. They need us to be at our very best, which means making sure we are taking care of ourselves. Being a part of the UDN allows us the ability to work collaboratively while supporting each other. None of us knows everything about everything. What one person lacks, the other excels in. We feed off of each other’s strengths and encourage constant growth. We don’t give up. We are hopeful. And having hope is the key to persevering.