Had my yearly check up with my connective tissue disorder doctor today, just got home about an hour ago.
Good news! My aorta is still doing fine!
My doctor decided today to reclassify me as having Ehlers Danlos Syndrome (Hypermobility Type) instead of Marfan Syndrome. So yay, not likely to need heart surgery in the future! We are going to keep an eye on my heart just in case, but it’s less of a concern now. EDS is still a connective tissue disorder, and still accounts for all my joint pain/hypermobility, fatigue, and coexisting conditions. I’m still likely to have increasing problems with my joints as I age. Really the only thing that has changed is that I don’t need to be so concerned about my heart.
I know Dr. L gave me reasons as to why he decided to change my diagnosis, but honestly right now I am so achy and brain-foggy that I don’t remember what the reasons were. Curse you brain fog!
He likes my way of coping with the condition (I explained to him that it is thanks to Martina Stawski) and he wants me to talk at one of the panels at this year’s Marfan Foundation Conference in July (the Foundation also deals with related disorders like EDS). I was already planning on going to the conference anyways and I would love to help spread Martina’s message to more people! I suppose I could see if Martina herself wants to speak at the conference, but she lives all the way in Japan, so I don’t know how feasible that is. I will try to email her though.
All in all I had a good day today.
Now it is time to go take a nap with my cat because I have a headache and he is a cute ball of floof.
Keep Building Those Ladders Folks! ❤
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