Numismatics J/K (Or, a recent diagnosis of Ehlers-Danlos Syndrome)

While my primary intention with this blog is to chronicle my life as a gay male living with Crohn's disease, I wanted to take a quick minute to explain my health history in more depth. I was perpetually the sick kid. Most notably, as a young infant and toddler, I suffered severe environmental allergies, and to this day I pop a Zyrtek (Cetirizine) on the daily. Even if I miss a day and the pollen counts are high, my skin itches, throat tickles, and my eyes inflame and turn red (not great for a contact lens wearer). I was diagnosed with Benign Rolandic Epilepsy in kindergarten, and had seizures (only a few grand mal ones, though they were very, very bad) and chronic tic disorder until things resolved around the age of 17, as BRE usually does. It delayed me being able to even attempt to get a learner's permit and, eventually my driver's license. My Crohn's diagnosis came in February of 2001, as a 17 year old junior in high school. Years prior to that, I had all sorts of odd and seemingly disparate symptoms.

Last week, I was diagnosed with Ehlers-Danlos Syndrome, likely the Classical type because I have internal organ fragility issues, included a dilated aortic root (my blood pressure, left unmedicated, reaches life threateningly high levels). EDS is a heritable connective tissue (collagen) disorder, wherein the DNA coded for varios types of collagen is defective. I am hypermobile (often misnamed being "double jointed), and I always have been. In certain parts of my body, my skin is hyperelastic, meaning that I can easily pull it off from my body. I had noticed this years ago, but never thought much about it. When I scar, it is keloid (raised) and I do also get what are called cigarette paper scars, where it looks like I was burned with a cigarette. My spleen is enlarged, as is my prostate (that sometimes makes certain gayish sexual practices more fun, yes . . . I'm always identifying silver linings). I have early onset periodontitis. And, while the boys seem to love my lips, if I don't take exceptional care of my gums, it looks like I was in a bar fight and was punched in the jaw. I have mild scoliosis, and herniated discs in my lumbar spine and up by my neck. Several of my joints subluxate, which means they partially dislocate from their socket. Most recently, my left hip just popped right out. And yes, it is not comfortable, and, yes, I just sort of pushed it back in.

EDS, as I said, is heritable, and now with my diagnosis, members of my family on my mother's side can, hopefully, make more informed decisions about their own health. My mother, maternal grandmother, and my maternal aunt and her three daughters all show symptoms of EDS. Some show different symptoms from mine, and to varying degrees of severity. If it weren't for my extreme hypertension and finding out about my thoracic aortic root issue, I would likely have never known.

So, my interests in health and identity around sexuality were a long time coming. And regarding numismatics, that is the fancy schmancy term for coin collecting. If anyone has something sassy and kitschy about those who seem to collect chronic diseases and conditions, please send them my way.

So, there is a little update about the kaleidoscope that is my health. There are some other things lurking in my kidneys and such, but I'm waiting until that's diagnosed before I jinx myself.

Be well, and be informed about your body.

An example of my skin displaying dermatographic uticaria (L50.3 being a diagnostic code for it). My skin's mastocytes abnormally react to being scratched and start up an inflammatory response. In undergrad, my boyfriend used to write less than polite phrases on my back. Everyone, myself included, got a good laugh at that. My mother is also dermatographic.

This was taken in October 2012, and is an example of extreme gingiva inflammation and early onset periodontitis, which runs rampant in my family. And, now, it is likely that EDS is the cause, because of the malformed collagen in my gums. My gums bled like this just from relatively gentle brushing. I now have to get my teeth cleaned by a periodontist six times a year, use special mouthwash (Rx only), floss more regularly, and use a Water Pik to irrigate my mouth. I am trying to ward off losing all my teeth. My lineage is stacked against me, sadly.

Here is an example, and a very typical one, of hyperelasticity of the skin. People can be hypermobile and hyperelastic without having other criteria for an EDS diagnosis, but it is a tell-tale sign and is used in making the eventual diagnosis. 

Here is an example of hypermobility in my thumb. It is NOT normal to be able to do this, and it damages my tendons or ligaments or whatever each time I do it. It's a fun party trick (in fact, my friend took this at our local gay bar), but EDS patients should not continually do this. This is one of the hypermobile tests that comprise the Beighton Score, a less than perfect series of tests for hypermobility of the joints. More seriously, my hips and shoulders are fairly hypermobile (and I have osteopenia - pre-osteoporosis - in my hip). My grandmother, who likely unknowingly has lived with EDS her whole life, is 84 and has severe shoulder issues. I'll have to carefully monitor my joints and bones to identify early-onset osteoarthritis and osteoporosis.