Ms Click on Marfan Syndrome

Ms Click is a very active member of The Modified Dolls Texas Chapter.  She has Marfan Syndrome, and since our Charity of the Month for February is The Marfan Foundation, she’d like to share her story with you:

“My mother passed away when I was 13 days old due to an aneurysm of the heart caused by Marfans. It was always believed that I too had Marfans, but there is no “test” for it… at least none that insurances will pay for testing your chromosomes. I started have super bad chest pains and shortness of breath, and palpitations in Oct of 1996. The Dr. I worked for told me I was having anxiety attacks, so they gave me anxiety medicine. It didn’t go away. He decided with my family history it couldn’t hurt to have an echocardiogram of my heart. They told me that everything looked ok, but my dad was not ok with the fact that my aorta was slightly enlarged (it was supposed to be 2.5 cm, it was 5.5 cm), back then surgery wasn’t until 6.1 cm. So they said they’d monitor it. A week later, I found out I was pregnant at the age of 20 and was super excited. LONG story short, I had to medically terminate the pregnancy, b/c my heart was already working double time (hence the chest pains, shortness of breath, and palpitations). Practically kicking and screaming, I did what the Dr’s ordered me to do… and I got VERY sick, my body was mad at me, and I was mad at me. That was in December (so I was only 11 weeks when I “medically terminated” the pregnancy… they say it that way so it doesn’t sound as bad. Though I still feel like a piece of me died that day). I had an IUD put in in Jan. because the Dr. told me that my heart wouldn’t be strong enough to ever carry full term.  February rolls around and I was still having chest pains…though the Dr thought is was psychosomatic b/c I was still very depressed about the abortion. End of February they sent me to a surgeon b/c they thought they “saw something different” in my results. I went on a Friday. The Dr was the same Dr. that had done my moms surgery 20 years before that. They said that it wasn’t surgery rate yet, and we should wait. My dad said we weren’t leaving until the surgery was scheduled. I was schedule for that following Monday (3 days later). He told my dad that he would fly a Dr. in from Houston and he understood if he didn’t want him doing the surgery. My dad said he trusted him fully. They went in to do the surgery and had already torn through the 2 most inner layers of my aorta (you only have 3 layers… so basically a sneeze could have killed me). My dad saved my life. Not the Dr.’s

The point to this is, Marfans is no joke. Most women who have it do not know until it is too late, and most die during child birth due to the strain on the heart. It is also common in athletes. You see them dropping on the court due to an aneurysm. It is somewhat of a silent killer.”

Check out our most recent upcoming events post to see what Ms Click and the Texas Chapter have in store for #MarfanAwareness Month!