Living Well Within the Rules
“I have become an advocate for my body and my journey.”
By Rebecca Matte
Over the years, Rebecca Matte of Delray Beach, Florida, has been told she isn’t typical of people with Loeys-Dietz. Some doctors told her she didn’t look the part. Others told her she had Marfan syndrome.
“Typical or not, it doesn’t take away from my experience of having Loeys-Dietz syndrome,” said Rebecca.
From her own medical needs, like being born with a cleft palate, to her father’s heart surgery and suspected Marfan syndrome, connective tissue conditions were a part of Rebecca’s life from the beginning.
After Rebecca's father passed away following heart surgery, many things changed. One major change was that, at age 13, Rebecca was given a Marfan syndrome diagnosis. She stopped playing basketball and took up piano instead. She learned the rules of what she could and couldn’t do to protect her health.
“Even though I played by those rules,” she said, “I had my first aortic aneurysm and needed surgery in 2000.”
In 2009, some of those rules changed again when Rebecca was re-diagnosed with Loeys-Dietz syndrome. Since she had already made many lifestyle changes as a teenager, the new diagnosis meant that regular MRIs had to go from pelvis to head, but, she said, the rest of the rules still applied.
There have been more check-ups and more surgeries, more scary moments and more beautiful ones in the years since Rebecca’s diagnosis, all which are fairly normal for life with LDS. And whether she’s typical of people with LDS or not, Rebecca has been busy living a full life within the rules of her condition.
“A few things I have learned is that while I might have physical limits, I still can experience the sweetness and beauty of life,” said Rebecca. “I have gone on rafting trips and long hikes; played lots of board games with my friends; and experienced as much as possible. It’s not about how fast it gets done but that I experience it. I am thankful that because of Loeys-Dietz syndrome, I have become an advocate for my body and my journey.”