Matters of Heart: June 2018
Shopping for a good cause!!
To help us meet our goal of raising $5,000 this June and July, please click the link to the website, select "Shop to Support a Cause", choose your items and "Add to Bag," then proceed to checkout. Please enter the LDSF code 791474, press "Go" and "Save to Continue", then your payment information.
Meeting members of our community...
Hi Loeys Dietz Syndrome Community! My name is Isabella Williams. I am 17 years old and I was diagnosed with LDS type 2 at 5 by Dr. Dietz himself.
I was born with bilateral clubbed feet, I had an achilles lengthening surgery on my left foot at 18 months, and at 2 years old I was diagnosed with a few food allergies. As a baby, I suffered from undiagnosed reflux and cried often, no matter how much sleep or food I got (hence my lasting nickname: Fuddy Girl aka Fussy Girl). As their first child, my parents didn't realize that my discomfort was unusual or even a piece of a bigger puzzle. I was born in Colorado and lived there until I was four years old, at which point we moved to Maryland for my father's job.
My pediatrician in Potomac diagnosed me with scoliosis and referred me to Dr. Sponseller at Hopkins. During that visit with Dr. Sponseller, he sent my father and I up to cardiology for echocardiograms. It was discovered that I had an aneurysm on my aortic root and Dr. Sponseller referred me to Dr. Dietz, who diagnosed me with LDS.
Over the next several weeks, it was discovered that I also had a bicuspid valve. In January of my kindergarten year, I had aortic root replacement open heart surgery, and my valve was spared. When I was six, I had a hernia repair surgery as well.
At age ten, we moved to the Bay Area of California. Two years later, I returned to Hopkins for spinal fusion surgery with Dr. Sponseller to fix my scoliosis and spent the entire summer recovering. While preparing for the surgery, Dr. Guerrerio found that I had hyperthyroidism, later diagnosed as Graves Disease. I was stabilized for four years and relapsed last year. My endocrinologist adjusted my medicine and I was stable for another year. I relapsed again March of this year and am now looking towards a thyroid radiation treatment later this year.
I am the only one in my extended family that has LDS. In spite of the challenges I've faced, I am an avid lover of life and am grateful for the blessings of my family, friends, and especially the doctors and nurses that are dedicated to helping those with my condition. I am eager to reconnect with the LDS community this summer at the conference in Baltimore.
"I am moving to Iowa, do you know of any good orthopedic surgeons there?"
Have you ever moved to a new state and had to set up a new care team? It can be daunting. Help us create a referral resource for specialists that you have had good experiences with!