New Blog: Swyer Sister

Came across a new and fantastic blog written by a lovely Swyer Sister.  I am so excited to read her updates as she continues her story and thoughts:

http://swyersister.tumblr.com/

Quest for more Medical Records

In a recent post I believe I mentioned wanting to hunt down my remaining medical records, should they still exist. I've had mixed luck. The records from my hernia procedure at age two have already been destroyed. It took place in upstate New York, and New York state law only requires that records for a minor be kept until after the patient reaches the age of 18.

Still working on the records from my gynecologist when I was a teen. Although I have the hospital records which explicitly show that she and the surgeon lied to me, I only just a week ago requested the records from the gynecologist. I am nervous that they will be hidden or destroyed, as I hear is sometimes the case when patients with DSD (disorders of sex development) request them. I grew up in Nebraska, and according to Nebraska state law, the records must have been kept at least ten years, but in practice are often kept longer. Let's hope it's the latter. The last I checked, they had not been faxed yet to my new doctor's office.

Georgetown University has a useful reference on medical records, laws by state, and your rights under HIPAA. Have a look at http://hpi.georgetown.edu/privacy/records.html

Revision of AIS on Wikipedia

Several women with AIS and related conditions and I made a major revision to the Wikipedia page for Androgen Insensitivity Syndrome last week.

Previously, a photo of a man with a "micropenis" was the only image shown. He was standing there naked, with a tanline around the watch area visible, and a black box obscuring his face. Classic medical photo "protecting" the subject's identity but inherently also casting shame on the condition. Furthermore, the vast majority of individuals affected with AIS look more female than male and identify as such. This photo was clearly not an accurate representation of the syndrome.

A friend with AIS removed the photo and replaced it with our own: A beautiful color photo of a dozen plus women with AIS and other similar DSDs, all fully clothed and smiling. Check it out on the Wikipedia page under the heading "Variations produced by androgen insensitivity".

This photo was taken at a conference held a few weekends ago for women with AIS and related conditions (Swyer's Syndrome, CAH, and others). I of course was in attendance. It was a great weekend and I will talk more about it when I have time. For now though, the workday is calling my name!