Rare Disease Day

It’s here! The countdown to rare disease day comes to an end. However, since I started the 100 Positive Days very late, I will keep going on into March, April, and May! In any case, I thought I should stop and take a minute to share some education about the rare illnesses that I have, and hopefully bring some awareness.

Ehlers-Danlos Syndrome

Ehlers-Danlos (EDS) is a genetic connective tissue disorder, which can present itself in a variety of forms or types, including a vascular form which can be life-threatening. However, I have type III, also known as “hypermobile” form. They call us “zebras,” – since we are often medically complicated and hard to figure out – hence the zebra on my blog banner. Hypermobile EDS, also often identified as “Joint Hypermobility Syndrome”, affects 1 in 10,000 people. What it means for me, is I do not have enough collagen and my joints are very loose and stretchy. I’m really good at yoga and gymnastics but should never be allowed to do them because there’s a good chance my joints will dislocate or at least sublux (partially dislocate). I have severe joint pain and my shoulders often sublux, creating further trauma. EDS is the cause of many of my other issues, including two I will mention below, so diagnosis is important to help understand other symptoms. Often a rheumatologist or geneticist can help make the diagnosis, which is typically made from physical manipulations (beighton scale) and symptoms, rather than genetic testing.


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Gastroparesis Awareness


Sooo the color for gastroparesis awareness just happens to be the same as celiac! Green. Cool. Anyways “they” (the powers that be) decided we should all wear it on Valentines Day. My question: Why valentines day? When everyone is wearing pink or red (or if you’re on my campus, today is a huge basketball game so they are all covered in blue). Is it because we have awful digestive tracts that makes dating awkward?┬áIs it because most associate valentines with candy which might make us sick? Who knows. Anyways, I’m all about awareness, so here it is!

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