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EDS on Mystery Diagnosis
This episode of Mystery Diagnosis featurs a girl with EDS!! It was positively fascinating and eye opening, even for me and I’ve lived and heard some pretty crazy medical stories! It’s heartbreaking how...
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Ehlers-Danlos Awareness Month – Facts 18-21
(You’ve probably noticed that I started grouping up the EDS facts instead of doing them once a day – this is because many of them make more sense together, when read one after the other.) Fact #18:...
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Ehlers-Danlos Awareness Month – Facts 22-25
Fact #22: Those with EDS (especially the vascular type) are at an increased risk of arterial rupture (such as aortic dissection) which if not promptly diagnosed and treated can lead to death. If you...
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Ehlers-Danlos Awareness Month: Facts 26-28
Fact #26: It is recommended that people with EDS do not play competitive or contact sports due to the increased risk of injury, as well as the pressure they put on the fragile bones, joints and...
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Ehlers-Danlos Awareness Month: Facts 29-31
Fact #29: EDS can also be accompanied by blood disorders such as clotting and platelet abnormalities. Skin that is easily bruised occurs in all types of EDS to varying degrees and is essentially...
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Finger ring splints
I’ve been having some problems with my fingers the past few months, particularly the middle and index fingers. They hurt quite a bit at the mid knuckles and have been hindering my ability to draw and...
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Long due update!
It’s been quite a while since I’ve had a good chance to blog! Summer’s been busy (probably not in healthy-people standards), but things should be easing up now. That being said I can’t believe how...
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A long night.
The last couple of days have been pretty lousy. Sorry, I know I haven’t been blogging anything very positive lately, my body just seems to be going through one of it’s really low points. I’ve been...
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Marfact #15, genes, and connective tissue disorders.
In honor of Marfan Syndrome awareness month, here’s today’s Marfact (provided by the wonderful Marfan Foundation). Marfact #15: Marfan syndrome is caused by a defect (mutation) in the gene that tells...
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A guest post by Destiny
“My name is Destiny, and I am 20 years old. I love Panda’s. I’m a pretty plain girl…I love the colors black and white! Oh yeah, I’m also dying. Yep, I’m 20, and I am dying. How wonderful, right?” I...
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The hospital stay.
Things can change so fast. And, likely not so dissimilar to a perfectly healthy person, life is full of highs and lows, peaks and valleys. I won’t deny that often during the lows, as a chronically ill...
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The hospital stay: part 2
Continued from yesterday. Photograph by Dikaseva The spinal fluid leak and post-dural puncture headache. During the lumbar puncture they were instructed to get fluid for diagnostic testing, but also...
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Struggling with POTS
One of the conditions that I’ve been dealing with—that I don’t often talk about—is known as Postural Orthostatic Tachycardia Syndrome, and it frequently co-occurs with the type of connective tissue...
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Eye and heart updates (again).
With everything that has been going on with my optic discs and brain lately, I never took the opportunity to write about the outcome of my cardiologist and ophthalmologist appointments from last March....
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Getting Creative in Order to Minimize Pain: An Orchard Corset Review
This is my review of the corset that I recently got from Orchard Corset, as well as my thoughts and experience in dealing with the company itself. Disclaimer: A month or two ago, I contacted Orchard...
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