I would love to listen to this...but like many people with EDS I also have an auditory processing disorder and I literally can't make out half of what she said.

the audio on this is very poor. would it be possible to enhance it?

bad audio aaaannnd… only the top half of the slides. Peachy. Can we get a transcript to take to our Dr. who won't believe us anyway?

So congenital adrenal hyperplasia is linked to rare forms of EDS and cortisol abnormalities are associated with POTs. Were any endocrine abnormalities identified in EDS patients without POTs?

I struggled through this whole presentation; the audio is intolerable. What a shame; this presentation sounds so extraordinary, and I wish to be abke to comprehend every word of it. I hope I can find a way to find it in writing.

The sound is so bad that when the person coughed so much louder than the presenter's garbled sound, I literally jumped. This is too bad. We need this information. I'm diagnosed fortunately, but there's no specialists in hEDS in my area, and Ive heard there is maybe one in all of the western states, U.S..

@pine.siskin

3 жыл бұрын

What state do you live in? There is a specialist at the University of Washington and one in Pullman, Washington. I was able to get in via telehealth appointment at his clinic within two weeks. You could try and do a remote appointment with him.

Can't listen to this but got one thing out of it - New thinking about CAH adrenal insufficiency is that it's a continuum.

Is 12.5 a normal fasting morning level of serum cortisol ( before 9 am ) in a 16 yr old? Also measured Low ACTH on two tests

The audo isn't very good but what do you do if your obgyn thinks you have this and referred you to an endocrinologist and the endocrinologist says this isn't my job, you need to see an Obgyn. Meanwhile I'm also paralyzed and have gained 20 lbs in three months and can hardly fit in my wheelchair anymore? We tried four other endocrinologists but my insurance won't cover any of them.

@Dulcimerist

2 жыл бұрын

What did the OB/GYN think you have? An endocrine issue of some sort? If it was one of the 13 different type of Ehlers Danlos syndrome, you should have been referred to a geneticist or perhaps a rhuematologist who specializes in collagen based disorders. The most common type of Ehlers Danlos syndrome, hypermobile type, could be diagnosed by pretty much any doctor who is familiar with the updated 2017 diagnostic criteria.