My daughter has Ehlers-Danlos Syndrome, as do I. It's a complex connective-tissue disorder that causes all the collagen in the body to be faulty -- and since collagen is basically what holds us together, you can imagine the havoc that it causes.

She has Postural Orthostatic Tachycardia Syndrome (all of this is fallout from EDS), and has been monitored by a cardiologist for several years.

On Thursday, we were told that she had developed cardiomyopathy (damage to the heart muscle), a very rare complication of EDS/POTS. She will need rigorous monitoring, many doctor visits, new medications that require careful balancing (they need to slow down her heart rate without bottoming out her already-low blood pressure), and it's possible that she may not be able to return to college in the fall -- getting this degree, from her first-choice school, in a field she's passionate about (Environmental Science) has been a hard-won dream of hers . . . but if she's not stabilized, it would put her in danger to be in a small, isolated college town, far from any specialists who could treat her.

If her cardiomyopathy cannot be controlled, she could experience congestive heart failure.

In the meanwhile, her finger hypermobility has worsened to the point that she needs permanent metal splints to keep each joint of her fingers from bending backward, tearing her tendons, and causing osteoarthritis, as well as grip weakening and loss of dexterity. She has been seeing a hand therapist, but she is going to need $2000+ worth of ring splints, and the specialty company that makes them doesn't accept insurance. (We'd have to self-pay and then apply to our insurance for reimbursement, which is not guaranteed and probably would only be a percentage of the cost.

So -- I apologize that I will be needing to make some sales posts in the near future. It's not my intention to spam my friends and watchers, but my dolls are the only valuable thing I own, other than my car (which is our sole means of transportation, so obviously I can't sell it.)

If you would be kind enough to share my sales with friends who you might think would be interested, I would be deeply grateful.

Thank you for your patience and understanding, and we would welcome any positive energy, good vibes, prayers, and supportive thoughts being sent Kira's way -- no need to comment, but I believe that it really does help to have people who are pulling for her to get through this.

I've described EDS as "a slow car-crash of a disease" -- it causes a chain of failures that has put me in a wheelchair, required surgeries and medications, caused tumors, autoimmune attacks on my thyroid, trigeminal neuralgia, and a constant stream of other medical crises (if it's not me, it's Kira -- she was seriously ill for five years with chronic iron-deficiency anemia that not even IV iron could treat -- we've finally found a blood product that allows her body to process iron, but since she has GERD and a gastric absorption disorder related to EDS, we're always trying to make sure that she doesn't wind up with other nutritional deficiencies.)

This is different. This is . . . terrifying.

Her doctor hopes that we caught it in time, and that it can possibly be reversed with medication and good luck. I hope we catch a break with this, because the alternative doesn't bear thinking about.

Much love to all <3