#postural orthostatic tachycardia syndrome
remember to register for the dysautonomia international conference if you’re interested! it’s free and they send you all the recordings with captions afterwards. it’s looking like there’s a lot of new exciting info!
Hey y’all! So I’ve been getting IV infusions twice a month for POTS, and I feel like I’m always fussing with coats or sweaters trying to stay warm during them so I decided to make a sweater with IV access on the arms! I thought about getting one pre made but the ran around $60 so that was a no go. I was thinking about seeing if anyone wants one? I’d charge likely around $30 to cover material and labor and whatnot. If you’re interested please feel free to message me!
Image description:
{a light skinned person is visible in photo 1 and 2 from the neck to around the knees, they are wearing a navy blue crew neck sweatshirt and a white loose fitting long skirt. In the first photo the sweatshirt appears to be normal but in the second photo they are showing that the arm of the sweatshirt can be unbuttoned to expose the arm for IV access. In the third photo a close up on the sweatshirt arm and black clasp buttons are shown.}
End description
In November 2014 I was diagnosed with Ehlers Danlos Syndrome (EDS), a rare genetic connective tissue disease characterized by joint hypermobility, chronic pain, and more.
My diagnosis was both a blessing and curse. At first I was thrilled because I finally knew what was wrong with me. Throughout my entire life it was clear that I was different. I couldn’t run like everyone else, I held a pencil strangely, my joints would constantly ache, and my fingers looked very odd due to their bendy nature. Most people, including myself, just thought I was weak. I tried exercising; I took swim, ballet, tap, jazz, hip hop, and gymnastics classes. However, I always ended up quitting because it hurt too much. At one point I was told I needed to see psychiatrists because the pain “was all in my head”. Based off of my appearance, I was a perfectly healthy young girl. So after finding out that I had EDS I was relieved. I already knew I wasn’t crazy, but now everyone else knew. My chronic pain and frequent excuses for not participating in “easy” activities were finally justified.
Nevertheless, my diagnosis terrified me. Upon being diagnosed I was quickly referred to a cardiologist, for heart problems are extremely common with EDS. In fact, EDS affects almost every part of the body, because collagen (the connective tissue EDS affects) makes up 30 percent of your body tissue and 70 percent of your skin tissue. After getting heart tests done, my doctor discovered that I had frequent premature ventricular contractions.That alone didn’t scare me; what scared me was that my problems got worse. My joint pain, my heart problems, my eye sight, my gastrointestinal reflux disease, they all got worse. And with my condition, a lot of it will continue to get worse. It is very likely that one day I will need surgery or that I will be in a wheelchair. And this is why this tumblr is so important. It is a call for awareness, and it is a call for research. Research that may lead to cures, so I won’t have to suffer any longer
