If you are the 1 in 5000 people with Marfan’s syndrome, then you have a story of how you came to know about this rare condition. Whether you were born with it, or if it happened spontaneously your story is worth hearing so drop a comment down below!

So if you haven’t read my about page, I will spill a little tea. I have Marfan’s syndrome. Yes, yes, I know scandalous. I came to find this out around October of 2024 at the age of 33. I bet your wondering how I found out so late about this condition, and why I wasn’t diagnosed earlier. Well if you have time I can go into this whole ordeal, and explain why I think this happened.

At the beginning of my post I explained 1 in 5000 people has Marfan’s syndrome, so it’s rare when someone says they have. Let’s just say it’s so rare that when you mention it to doctor’s they either look at you like you’re dumb, or brush off like it’s not real, or because you don’t fit the description of the syndrome so they are completely dismissive. The last one happened to me, but if they had taken a closer look I actually did fit the description. I would also like to add that knowing your family history makes a difference on being diagnosed also, because there is a 50/50 chance of getting this condition. So as you can see it went over the doctors heads, literally!

So let’s fast forward to maybe a week prior to my surgery in October. I was having shortness of breath, and it wasn’t anything drastic. Even though it was consistent I was still working, going grocery shopping, doing my regular duties as a mom and wife. I was also having palpitations here, and there also, but it never dawned on me that I had anything wrong. I remember one day after work, the shortness of breath was very heavy, and I told my husband I was going to the hospital after work of course. Got to make that money, especially in this economy.

I originally thought nothing was wrong, because I’ve gone to the hospital before with shortness of breath, dizziness, lightheadedness, etc. and I was told everything was fine. I thought they were going to say the same thing, but I was wrong. After getting my information, running test, and getting imaging. They had came to the conclusion I had Marfan’s syndrome, and I needed open heart surgery. It had turned out I had aortic aneurysm measuring 9.6cm, and a leaking valve. I then realized I wasn’t going home any time soon. How did you feel when you were first diagnosed with Marfan’s syndrome?

So I was devastated in that moment, because I felt like my life was flashing before my eyes. At the same time I was grateful I was able to come, and be seen and get treated. Just because some people go into dissection, and can eventually pass away. If you or anyone has lost a loved one from Marfan’s, you have my condolences. I lost my dad January of 2025, and it was hard but now I’m in a better place. I’m currently 9 months post surgery, and I’m doing great! I hope you all are doing great also.

I was in the hospital for about a week, and then got to come home and began my healing process. In another post I can talk more about my recovery process, and other things Marfan related. This is really how I came to know I had Marfan’s syndrome, and the rest is history. How did you, or someone that you love come to know about Marfan’s syndrome? I look forward to hearing all the stories. Until next time, be blessed and stay healthy!

Here’s a picture of me now! ❤